Question 1 Responses

When Should I Be Concerned? (Diagnosis and Screening)

Themes from Responses to Question 1

• Need improvements in access and accuracy of adult and adolescent diagnosis
• Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
• Improve accuracy and awareness of diagnosis of females
• Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
• Need to increase/decrease early screening and diagnosis of ASD in children
• Better understanding of early signs and symptoms
• Families need emotional support following diagnosis and assistance in navigating access to services
• Need to reduce the time to diagnosis by improving service access and diagnostic tools/process
• Need more and increased access to genetic screening
• Need to strengthen link between initial diagnosis and access to services and interventions
• Practitioners need to listen to and consider parent concerns about early signs and symptoms
• Parents and caregivers need greater education so that they can recognize signs and symptoms
• Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
• Improvements in the accuracy and usability of screening and diagnosis tools
• Better recognition and diagnosis of subgroups
• Universal screening for ASD is needed
• Current priorities are appropriate (diagnosis and screening tools, early signs, symptoms and biomarkers, identification of subgroups, disparities in diagnosis)
• Multiple Themes Addressed

Need improvements in access and accuracy of adult and adolescent diagnosis

Respondent	Response
Anonymous	Difficulties in getting adults assessed and diagnosed with ASD - few practitioners work in this area.
Sarah Hunter	I have many adults who call me saying that they think they have autism and asking where they can go for a diagnosis. Although screening of young children is now routine, it is very hard to find a place for adults to go to for an evaluation that is covered by state health insurance and doesn't have a six month wait list. Accurate diagnosis of adults needs to be a priority moving forward, as many of those who seek my help are homeless, jobless, socially isolated, and dealing with co-occurring mental health issues.
Peter W. Allen	I am a 53-year old person who is told today by at least two professionals that I have Asperger Syndrome. However, from Kindergarten through 12th Grade in high school no teacher, principal, or school M.D. ever said a word to me or my parents about my having Autism Spectrum Disorder. The grades I received were always above average, usually B's, but sometimes A's as well. My last FT job was 10 years ago, but after the most recent 3 places I applied for work with, I have the feeling that no employer in America will ever hire me. By the way, I was in the USAF four years, Active Duty.
JLG	Adult diagnosis criteria for autistic adults born before the 1970's is a problem. I was diagnosed within the past year and it seemed confusing to the neurobehavioral expert that I worked with that I exhibit different "symptoms" than males, particularly young males. I was asked if I like trains (no!), maps (yes!!!), and it was "observed" that I lacked visible stimming behavior. Really? because I have 45 years of experience in honing my stimming to be as subtle as possible doesn't mean its not there in full force when I'm home. In that interview I behaved as I've been habituated to behave in an interview. My every-30-minutes trips to the restroom down a long hall was my stim-relief during my "interview" and testing period. This should have been obvious given my age. My bladder is fine, but my body cannot sit motionless like that for very long, as I continue to lose my ability to think clearly without a rhythm to rely on.
Angela Mai, MBA, Walden University Ph.D. Candidate, Public Policy and Administration	Autism spectrum disorders (ASDs) are often a hidden developmental disorder, particularly from those not trained to see them. Many high-functioning people grow up being treated as if they have discipline problems and ADD, ADHD. Their autism is never diagnosed. I feel that the DSM-5, and previous editions, do not take this into consideration when they limit diagnosis to age 8 and below. I strongly believe that adults, especially middle-aged and above, should be considered for diagnosis. I have encountered countless individuals that I would deem, and others have deemed, high-functioning on the spectrum, but cannot get an appropriate diagnosis due to the limitation of diagnosis during youth. Many of these people cannot get / hold jobs due to their spectrum-related issues and they cannot get the help they need from the medical field due to their age. I feel that much more attention should be given to diagnosing and treating adults on the spectrum.
Anonymous	The most significant gaps in research, services,and policy are for adults who were diagnosed after or around 39 years old and older.
Jenni Sherriff	I don't have an opinion where early diagnosis is concerned. In my opinion, despite the need for more ready identification of high functioning autism, particularly at young ages, the most important gap is in the area of diagnosis and services for autistic adults. I was 25 when I was "unofficially" diagnosed by an unrelated medical professional who had a daughter near my age who presented very closely to me. A daughter who actually WAS diagnosed. That was fifteen years ago and I've still not been able to afford an official diagnosis for myself or my children. The reason? Although most insurance companies cover autism diagnosis, I have been unable to find a relevant medical professional who actually accepts insurance. Most insist upon cash payment. We need social and legal support. We need to know that we aren't, as I have been so often, going to be hired for our abilities and then fired for our disabilities. We have a LOT to offer the world and more than 80% of us are dependent on other people for our support because too many employers expect us to "stop being autistic" while we are at work. A paraplegic is never asked to be able to walk while in the office. A deaf person is never told they are expected to be able to hear while they are at work. But autistics are routinely told that they are not employable if they aren't able to adequately mask the social skills deficits which are inherently a part of autism.
Sara	Adults diagnosed later in life with Autism should be included. I am 56 years old and my primary doctor told me May 2015. I live in Colorado Springs, CO.
Laura Walls, Not available	Diagnosis and screening need to be enhanced for adults currently challenged. Screening in early childhood needs to be AFFORDABLE.
Tatia Kortepeter and Vicki Mabanta, A Work in Progress, LLC	All diagnoses should be a team evaluation that includes occupational therapy and speech/language pathology.

Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis

Respondent	Response
Frank J Kelly	I am highly skeptical that eye-tracking will be a reliable and specific predictor that a child is on the Autism spectrum. Being a behavioral response it is a function of many different brain processes including attention (explicit and implicit), reinforcement, cognitive strategies and it is impacted by deficits in motor control, visual processing and by many cortical and sub-cortical areas. I would suggest citations such as http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4615933/ http://www.ncbi.nlm.nih.gov/pubmed/26645375 My guess is that "deficits" in eye-tracking behavior will be predictive also for other neurological impairments but will not be specific enough for Autism. I encourage the IACC to continue their push to investigate more "fine grained" and causative biomarkers e.g. Kevin Pelphrey's work on STS, separate work on white-matter tract integrity and the intriguing work on using to identify inflammation in the brain. These techniques, I hope, will be studying mechanisms closer to the "true" etiology underlying the "autisms". High level behavioral responses including eye-tracking will confound many variables and although it may be accurate - might not be specific enough to be diagnostic.
Joaquin Fuentes, Policlinica Gipuzkoa & Gautena, San Sebastian, Spain	Biomarkers that help to consider prognosis
Cory Gilden, parent	biomarkers and comorbid conditions
Juergen Hahn, Rensselaer Polytechnic Institute	Identification of biomarkers which can be used for early diagnosis and screening as well as increase our understanding of ASD. While genetics has received a lot of attention in the last few years, biochemical biomarkers have not nearly received the same amount of attention as genetic approaches. However, there have been several promising results in the area of biochemical biomarkers which should be followed up on.
Christine Reel Brander	Housing for people who need 24 hour supervision Support services for people with co-morbid mental health diagnoses Appropriate medical and Nursing services to support people living in the community Developing a biomarker marker for future generations to understand their risk, biomarker development
Anonymous	Many in the community have participated in clinical trials designed to identify possible biomarkers. The results are not generally shared with participants.
Julie, Tuberous Sclerosis Alliance	Biomarkers will be critical to early intervention and possible prevention.
Kay Ashbrook, Myersbrook Supported Living Agency Corp.	Biomarkers. This research is really fascinating. It's been done for other disabilities, so autism should have it, too.
Parent	I think the word autism covers so much ground that developing a biomarker or single trait screening test may not ever happen. I think the most important thing is to err on the side of caution and get kids suspected of having autism or any developmental delay prompt access to speech occupational and physical therapy and any other appropriate interventions. Pediatricians need to be trained to screen and there need to be more developmental pediatricians available to guide these kids on their journey. I think there needs to be less emphasis on the precise diagnosis of autism and more on the general presence of delays, so that those with autism are not given preferential treatment and interventions for all developmental and physical disabilities are adequately funded Need to strengthen link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Currently, it is recognized, through empirical research, that those diagnosed on the Autism Spectrum earlier in life and who also receive Early Intensive Behavioral Interventions have the most positive future prognosis for habilitation and independence in living. As such, research should be aimed at refining diagnostic tools and techniques to better identify these individuals as early as possible. It should also be noted that such services as diagnostics, screenings, and evidence-based interventions should be fully covered under insurance policies in order to make them readily available to those who benefit from them the most. There is no use in refining diagnostic techniques if people are unable to access them and subsequently use the diagnosis to attain the proper services necessary to promote a meaningful and independent life. Need to increase/decrease early screening and diagnosis of ASD in children; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process
Katie Murphy	Racial and gender biases in diagnosis. Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Anonymous	Differences in screening/diagnosis of girls and boys and development of effective screening/diagnostic tools for girls. Differentiation of subgroups of the various types of "autisms" which will improve research in both causes and treatments. Better recognition and diagnosis of subgroups; Improve accuracy and awareness of diagnosis of females
Cindy Clearman	As a special educator who was served many students on the autism spectrum, my primary concerns are with disparities in diagnosis, presentation of diagnoses and implications to families, availability of appropriate services in the public schools, and training of teacher and support staff. Families need emotional support following diagnosis and assistance in navigating access to services; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Claire	In general, parents should be aware if their kid is more sensitive to things like noise or sound, or has some things that most kids don't seem to have, and doctors should be charting developmental stuff as well. So I don't think there's any reason to worry especially about catching a kid being autistic, unless the child is female or not white (the disparity in diagnoses for those groups are insane when compared to males- esp. white males). If no flags pop up, then I would start to think about a screening if your child is worried about why they're different. Above all else, don't hide the diagnosis from the kid. Having my diagnosis hidden from me when I was young (7) dealed a severe number on me and ideas i'm still struggling with today. Given the fact ASD is a developmental disability, it's clearly best to try and give each autistic kid the documentation needed as soon as possible. However, there's also autistic adults that, for whatever reason, have went along unnoticed- and they need just as much support and tools as autistic kids. Improve accuracy and awareness of diagnosis of females; Need improvements in access and accuracy of adult and adolescent diagnosis; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Need to increase/decrease early screening and diagnosis of ASD in children
Crystal Reuter	Diagnosis and screening tools early signs and symptoms Improvements in the accuracy and usability of screening and diagnosis tools; Need to increase/decrease early screening and diagnosis of ASD in children
Donna Gruber	Pediatricians need to be trained in recognizing the early signs and symptoms of autism. My son was not identified until I did all the research and got him help at age 7. He could have been helped for years but the doctors could not recognize the signs which honestly were obvious. There needs to be some kind of accountability for school districts to do child find. I called my school district when my son was 5 and gave a very specific description which was obviously an autistic child and the Director of Special Ed said nothing about the referral process or attempt to reach out to us. For 2 years I homeschooled him because I knew he could not make it in school on his own. Then when I got his diagnosis I asked the school for a referral and then they did it. School districts are too motivated by money and fail in child find as long as they can to save money. Something needs to be done to stop this. Practitioners need to listen to and consider parent concerns about early signs and symptoms; Universal screening for ASD is needed; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	I drive 45 minutes, and I know those that drive alot farther, for the nearest pediatric developmental docs. Their schedules are booked 4 to 6 months out. It took an entire year to get a diagnosis due to booked schedules. We waited 6 months for ADOS testing and results. We were lucky, my primary care doctor gave my daughter orders for speech and OT before we had an official diagnosis. My daughter is Autistic level 2. I knew something was wrong when she was 3.5 yrs old and she wasn't potty trained. I couldn't find a preschool that would accept her. I had never heard of Autism. Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Need to strengthen link between initial diagnosis and access to services and interventions; Parents and caregivers need greater education so that they can recognize signs and symptoms
Anonymous	I think the most important priorities are diagnosis, especially in adults and in girls; many adults, especially women, realize they are autistic after the period when we'd hope people would be diagnosed. I don't think looking for biomarkers is good because as an autistic adult, I don't want people like me to be selectively aborted, which seems likely if a genetic test is available. However, I do think it's important for living autistic people to be able to access diagnosis and receive help and services they may need. Improve accuracy and awareness of diagnosis of females; Need improvements in access and accuracy of adult and adolescent diagnosis
Anonymous	More readily available testing - parents should not have to wait months for their child to be tested. Medical Schools need to teach students about early signs and the importance of testing and getting children started on therapies - we waiting 3 years for a diagnosis. Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Within the first 6 -12 months of life a child may display symptoms that tend to correlate to ASD with sensory processing deficits. Therapy can intervene and educate parents to develop effective eating, behavior, self care, and social strategies for children and parents prior to a significant delay in developmental status Better understanding of early signs and symptoms; Need to strengthen link between initial diagnosis and access to services and interventions
Anonymous	Early assessments by objective assessors can allow early intervention. Norm references for behavior issues also help parents to understand how their child may be 'differrent', why it matters and how parents and educators together can address. Families need emotional support following diagnosis and assistance in navigating access to services; Need to increase/decrease early screening and diagnosis of ASD in children; Parents and caregivers need greater education so that they can recognize signs and symptoms
Jenny Keesee	diagnosis by QUALIFIED professionals in smaller communities. Professionals are diagnosing when at best they should be screening. With out proper diagnosis a proper plan of treatment can not occur. Parents don't have access to treatment. 20 visits of speech per year does nothing for a nonverbal child. Let alone ABA. ABA is the only treatment with scientific studies showing it's effectiveness. Other "treatments" need to either do their own scientific study or quit claiming they're effective. Need to strengthen link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	The most important priorities do involve diagnosis and screening tools, early signs, symptoms, and biomarkers, identification of subgroups and disparities in diagnosis however more needs to be done in terms of education for society as a whole in terms of what language this information is delivered in as well as how clear it is to understand. Possible barriers such as cultural constraints, educational levels and English as a second language are factors that are imperative to address across the nation at this point in time. Better recognition and diagnosis of subgroups; Better understanding of early signs and symptoms; Improvements in the accuracy and usability of screening and diagnosis tools; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Parents and caregivers need greater education so that they can recognize signs and symptoms
Anonymous	Two primary concerns: 1. Underreporting of ASD in minorities. Further projects must address methods to capturing this data. Projects should determine where minority children receive primary care and explore integration of valid and reliable ASD instrument to be used during well-child visits. Barriers to successful screening should also be explored. 2. Screening of children with high functioning ASD. A concern is for this population of children in school who are academically successful but struggle in social situations, communication and information processing. These children "fall through the cracks" in educational settings because their academic performance is unaffected by ASD. Yet, schools need to be able to perform screening for these children. Better recognition and diagnosis of subgroups; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Katherine Hall, Autism Society of Northern Virginia	The largest disparity I see in diagnosis is among adult women on the autism spectrum. There needs to be more research on how autism symptoms present in women because, too many are being misdiagnosed with multiple other disorders before being correctly identified as autistic. Also, there needs to be better access to diagnostic services for adults in general. Improve accuracy and awareness of diagnosis of females; Need improvements in access and accuracy of adult and adolescent diagnosis
Kelly Soisson	Early diagnosis is key, but finding appropriate therapies is left to the parent. There needs to be expanded insurance coverage for a variety of therapies, including Social Thinking and RDI for higher functioning kids. Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions
Kira Parris-Moore,, Parent of an autistic child	I believe that screening should occur before 18 mos. I also wish there was genetic testing that could be done during pregnancy to see if your child is autistic like they have for MR. That would be helpful to prepare you for what is to come and to begin interventions earlier for better outcomes. Need more and increased access to genetic screening; Need to increase/decrease early screening and diagnosis of ASD in children
Kristina, Project Youth Learning and Leadership	Pre-k identification and then early k-2 identification and parent education. So many parents don't know why their child is "different" and many schools react as if the child is a behavior problem--first. These delays because of lack of awareness and understanding can cause life long achievement issues. Need to increase/decrease early screening and diagnosis of ASD in children; Parents and caregivers need greater education so that they can recognize signs and symptoms
Anonymous	Every hospital in the USA & US territories should send home pamphlets about autism with parents of newborns. Every doctor's office should have a checklist to send home with parents at their child's 1 year checkup with milestones the child should meet by the time they are 2 years old. If a child is not meeting those milestones at their 2 year check up s/he should be tested for autism. Parents and caregivers need greater education so that they can recognize signs and symptoms; Universal screening for ASD is needed
Laura Cichoracki,, parent of a teenager with autism	I think early screening is the most crucial. I would like to see more resources invested in having every child screened routinely, as part of well baby checkups. I don't feel that biomarkers and subgroups are important at all. If a child has autism, their autism is unique. Pigeon-holing them into categories serves no functional purpose. Treatment plans for children with autism should be based solely on what that individual child requires, not what some rubric dictates. Need to increase/decrease early screening and diagnosis of ASD in children; Universal screening for ASD is needed
Lisa Settles,, Tulane University School of Medicine--Tulane Center for Autism and Related Disorders	There is still a very large number of pediatricians who are not screening children or are screening incorrectly. There remains a group of pediatricians and other health providers who do not know what to look for with Autism and are encouraging watchful waiting for families of these little kiddos. Although awareness has increased, there remains a gap in knowledge still. We continue to get families who cannot even say the word "autism" as they pronounce it "artism." Diagnosis is better with DSM-5 criteria, but I find not all providers are using specifiers. Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Linda Tortorelli	Access to comprehensive diagnostics is still a problem in central Illinois. Most doctors do not perform an ADOS. Recommendations from these diagnostic assessments are rather poor so families are very confused and uncertain as to what to do next. In large part this is due to the fact that in Illinois, Medicaid does not cover autism services so doctors a reluctant to recommend treatments they know their patients cannot access. Families need emotional support following diagnosis and assistance in navigating access to services; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Need to strengthen link between initial diagnosis and access to services and interventions
MaryAnn Pranke, Parent of Child with Autism	Early signs are important. Need to educate all parents about the signs. It is very scary for a parent to think anything is wrong but I still see too many children with clear signs of developmental delays and too many parents are still hanging on to the adage "every child develops at a different pace" so they don't inquire until the child is three or four and still is not speaking. Parents need to know when to inquire about their child. Pediatricians need more education to know when they need to make referrals. They are the ones who see the babies on a regular basis. Better understanding of early signs and symptoms; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Pediatricians need to be looking and explaining what developmental delays to look for. We didn't express our concerns to the pediatrician until we realized that our child wasn't developing language. It was only after his autism diagnosis that we realized that there were earlier signs and delays. The State stepped in with early intervention at 2 years old. Then, the school district took over with an excellent early childhood program. Every school district should have one. We are very satisfied with the schools and their support for our child and family. We pay for it by living in an affluent community. It is worth it. Parents and caregivers need greater education so that they can recognize signs and symptoms; Universal screening for ASD is needed
Megan Galvin	Diagnosis at an early age, screening tools used in well child visits, developing assessments that accurately measure tendencies in female children, as autism sometimes presents differently than it does in males. Improve accuracy and awareness of diagnosis of females; Need to increase/decrease early screening and diagnosis of ASD in children; Universal screening for ASD is needed
Melanie Pucino	It has taken 4 years to have my highly functioning daughter to be diagnosed for autism. I feel any organization testing for autism should adhere to a thorough test. Also we need to realize girls exhibit symptoms differently. Improve accuracy and awareness of diagnosis of females; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process
Anonymous	1. Ensuring that standardized measures are required to render an appropriate diagnosis. In my area, it appears that there are some professionals that over-diagnose believing that the child will "get more services." This impacts availability of services to those that truly need them. 2. Identification of subgroups and characteristics within subgroups to tailor intervention recommendations. Better recognition and diagnosis of subgroups; Improvements in the accuracy and usability of screening and diagnosis tools
Lani White	Disparities is diagnosis- particularly, race and gender Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Anonymous	there is a need for establishing biomarkers to help diagnosis and find subgroups of ASD. i believe that when we will be able to subgroup the kids with ASD we will be able to go forward with the treatment and the understanding of this disorder Better recognition and diagnosis of subgroups; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Rachael, Educator/Parent	Parents should become concerned when their child begins to miss important milestones or when the parent sees significant regression with milestones previously met. Unfortunately, many pediatricians, through no fault of their own, are not educated enough on signs of mild autism and can not tell the difference between developmental delay and autism. Standardized measurement tools in measuring developmental delays should be used to determine milestone deficits. At this time the research and diagnostic tools available to diagnosis girls is insufficient. ASD causes disturbance in social behaviors. Girls and boys develop socially at different rates and times. Girls develop some social behaviors that boys will not. When diagnostic tools that are widely used by the medical community were researched, designed, and developed only 10% of the population in those studies were girls. Therefore, the diagnostic tools used to identify individuals with ASD are designed to specifically diagnosis boys. However, those diagnostic tools do not measure specific disturbance of social behaviors in girls. This could be a reason there is a significantly higher diagnosis rate in boys than girls. Improve accuracy and awareness of diagnosis of females; Improvements in the accuracy and usability of screening and diagnosis tools; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Better medical personnel training on the signs & symptoms of autism. Better listening of parent's concerns. I knew something was wrong with my child, but it took one year of complaining & my son developing serious life threatening symptoms before his primary would even consider any testing. He kept saying, "he'll grow out of it". That was one whole year wasted when he could've started early & intensive beneficial therapies. Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Alexa Appel, Autistic person	My biggest priority with early diagnosis is the critical underdiagnosis and misdiagnosis trends for those who do not fit the young white male child model (children of color, girls, people who did not have opportunities to get diagnosed as young children, and especially intersections thereof). Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Shayna Franks	With prevalence of autism, there should really be info kits given to parents by doctors at either birth or 6 months. I had to learn if my daughter's delays through the WIC office. I also think doctors need to be more brave when doing wellness checks, my doctor kept assuring me that kids grow at their own rates, I had to ask her for a referral to get tested and my daughter is diagnosed. Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Early screening & intervention (2 or younger) is vital.. I have found that Doctors & pediatricians need more training & must ask more questions about any signs or suble symptoms that might indicate ASD to new parents who might not pick up on or realize something is wrong! Treatment should be more wholistic not just physical! Need to increase/decrease early screening and diagnosis of ASD in children; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	There is a tremendous need to review the markers of those individuals who are diagnosed with ASD and epilepsy as well as those who have a clear regression
Laura Cellini	1. Biomarkers and other conditions for susceptibility; Identification of MTHFR mutations; MtDNA mutations and deletions; mitochondrial dysfunction and GI disease; metabolic disturbances; toxicant exposure and genetic vulnerabilities; immune dysfunction (frequent URIs, ear infections, eczema, asthma, altered T cell function, frequent antibiotic use and altered lymphocyte profile); seizure disorder and allergies.
Lesly Weiner, Parent, teacher	children must be screened for MTHFR gene mutation at the VERY LEAST before being forced into the aggressive vaccine schedule - or any vaccine for that matter.
Carolyn Gammicchia, Parent of 26 year old son diagnosed with autism after sustaining a vaccine injury from six vaccines given in one sitting.	I feel we continue to waste funds on identification when we have a significate number of ways to identify autism. Additionally there have been numerous projects and programs developed in the last decade to do so. What we need to start looking at in research is needed studies that keep being ignored. When we look at bio markers we need to look at a parent's genetic predisposition to autoimmune disorders and what has been handed down to a child to look at how things like vaccines can cause injury to specific subsets of individuals due to the toxins within their contents.
Katie Romans	It would be beneficial if a blood test could definitively diagnose autism...
Leslie, Maryk	My son regressed at 19 months-- not too long after his immunizations. I think wellness checks should include biomarkers, gut testing, etc.
Matthew Carey, Autism Parent	>70% of information used to diagnose is from verbal communication with the patient. Sensory issues can very much limit diagnosis (how do you diagnose an individual with atypical pain response)
Mike , PASKERT	Can any "markers" be identified when reviewing a ultrasound procedure.

Improve accuracy and awareness of diagnosis of females

Respondent	Response
Jennifer St. Cyr, WithinReach	gaps in research: gender disparities (and appropriate interventions) in diagnosis gaps in service and policy: quality of life/community inclusion of autistic teens and adults
Anonymous	Disparities in diagnosis, particularly between boys and girls, men and women, should be a higher priority. Most research has typically focused on males. Many girls and women are never diagnosed because the research skews knowledge about diagnosis, early signs, etc.
Linda Bullock	Disparities in diagnosis - it is difficult to get an early diagnosis for girls on the high end of the spectrum. Diagnostics are based more on how boys with ASD present. Girls tend to be able to mimic those around them and so hide some of their characteristics. Special interests that girls have are usually more common for a NT female. So girls don't get early intervention as often as boys.
Mindy James	It is important to understand how ASD manifests in females as opposed to males. Many higher functioning females are being denied services because they are not being properly diagnosed - even when they test as ASD on assessments. There is not enough education on the disparity between how ASD looks in female as opposed to males.
Noel Arring, DNP, RN, OCN	I believe one gap related to this strategic priority is the lack of research related to girls with autism.
Anonymous	Identification in women/girls. Signs of autism are different in girls than in boys!
Ray	Diagnostic tools do not take into account the cultural differences in how boys and girls are raised. Many traits that are signs of autism in boys are traits that society tries to teach to young girls, so many girls that are autistic go undiagnosed until a much later age.
Anonymous	I am concerned about recognition of the signs of autism in girls. Girls are overlooked in research. Sex differences are a huge issue for me. HF ASD girls need to be identified earlier.
Kayla Weant, Prosper Independent School District	I think one of the largest gaps in research is the proper identification and diagnosis of females with ASD. Many of the current diagnostic tests rely on heavily skewed data from male-centered research, so females who don't display typical "male" behaviors often go undiagnosed or are diagnosed with a variety of mental illnesses or mood disorders.
Becca Lory	There is a giant gap in both diagnosis and screening and disparities in diagnosis for females on the spectrum. Funded research needed.
Tammy	More focusnon women and girls on the spectrum is needed. For everything from diagnosis to education to inclusion in studies.
Anonymous	I've read that the rate of males:females who are autistic is actually 1:1, but the under- or mis-diagnosis of girls and women is extremely prevalent.
Rebecca	Better screening and different criteria for females and adults. Females present differently and all of the original studies on autism were done on boys. Also, many female adults were never diagnosed and therefore didn't get any support through adolescence and still don't have an explanation or assistance for managing things like sensory sensitivities or comorbid conditions like alexithymia and anxiety.
Morgan Smith, An Autistic Adult	Firstly, it needs to be recognized that girls often present differently than boys. I do not believe that autism is 4x more likely in boys, on that girls are being passed over. I wasn't diagnosed until later because of this. As for services, there a very few services for autistic adults. When I try to find anything, even support groups, all I find are things for children or parents. Another big thing as it goes to diagnosis is how expensive a screening is. Most don't take insurance and alot of citizens are unable to pay for a diagnosis that would really help.

Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines

Respondent	Response
Annette Blanas	I believe that early screening tools that rely on parent input need to be carefully researched for potential disparities related to cultural norms and differences in the understanding of child development. For example in many of the Alaska Native cultures eye contact is different than that of non-native children. It would be important to look at how questions related to this are asked.
AMINAH LUCIO, YONKERS PUBLIC SCHOOLS	An important priority as well as a gap in research would include the disparities in diagnosis.
Cindy, parent	LIVING IN RURAL AREAS, THERE ARE NO QUALIFIED PROFESSIONALS. GOING THROUGH A REGIONAL CENTER, THE FIRST OBSERVER (ALTHOUGH WE SUGGESTED THE OBSERVATION BE DONE AT PRE-SCHOOL, OUTSIDE OF OUR HOME AND HIS COMFORT ZONE); DID NOT REFER US FOR TESTING. 2 YEARS LATER, THE SECOND OBSERVER CAME OUT AND INSTANTLY SAID YES! THAT WAS 2 YEARS OF EARLY INTERVENTION WE MISSED. 1ST OBSERVATION DONE A 2 YRS. 2ND DONE AT 4 YRS.
Erika Liljedahl	Screening and services in lower income populations is lacking. Education on early signs and symptoms of ASD across the SES boundary can assist parents to get the early intervention needed to provide a child the best possibility for success in school and beyond. The education can take the form of grant money for psychologists or diagnosing MDs to enter those communities to lead free talks about early signs and symptoms.
Anonymous	Diagnosis and screening is much better than it used to be. However, in rural areas it can be difficult to access people who will do a diagnosis and people often have to travel great distances to a center, usually in a city, to get screening and a diagnosis. this puts a burden on a family and the family has to rely on the local physician/pediatrician to recommend further testing.
Anonymous	Diagnosis and screening tools should be available to parents and children of all socio-economic backgrounds and levels, and should be a part of routine preventative medical care.
Jason C. Travers, University of Kansas Department of Special Education	Racial disparity in autism diagnosis requires swift and immediate attention from the IACC. Epidemiological prevalence as well as administrative prevalence indicate widespread racial disparities in autism diagnosis/identification. Although administrative data are often treated as less rigorous than sampling methods used by ADDM, these data are population level reflections of what is happening in schools. Given that schools are the primary source of treatment, the IACC should consider ways to examine the disparities in school identification and whether special education eligibility under autism is systematically withheld from diverse groups due to costs associated with school programming for these children. Much work is needed in this area to ensure racially, ethnically, linguistically, and economically diverse groups have equitable access to early intensive intervention vital to long term outcomes.
Jennifer Muyot	disparities in diagnosis
Amy	Disparities in diagnosis
Leslie Fox, US Department of Education - OSEP	The gaps in age of diagnosis and access to services between middle-class/white children and minority children or dual language learners are of great concern to me. Many children living at or below poverty level have access to minimal services even if they use Part C programs because these services operate under a "minimum" necessary allocation of service delivery hours and prefer primary service providers to team collaboration. This is in opposition to research which repeatedly supports early, intense intervention efforts. Wealthier families have the opportunity to supplement with private therapy or advocate within their Part C systems with greater savvy.
Anonymous	Disparities in diagnosis, particularly between boys and girls, men and women, should be a higher priority. Most research has typically focused on males. Many girls and women are never diagnosed because the research skews knowledge about diagnosis, early signs, etc.
Anonymous	Disparities in diagnosis Disparity state to state related to early intervening services
Nathan Call, Marcus Autism Center/Emory University	disparities in access to early diagnosis based on SES & racial/ethnic group, etc.
Rose Calloway, GaLEND trainee	Additional research and screening is need for people of color and the social determinants that affect early identification and interventions.
Sara Luterman, Self-advocate	I think all of the topics included are not good uses of resources for autism research except for disparities in diagnosis. Instead of focusing on biomarkers, screening, and identification of subgroups, I would love it if more research occurred around quality of life and service efficacy. Right now, there are millions of autistic adults in the United States. Millions more will transition soon. And there is almost no research about us, our lives, and how to improve our outcomes.
Anonymous	Where do I go to get the screening? How do we find a way to streamline the screening processing and spread awareness. Usually African American children get diagnosed at a late age due to stigma within the culture and the professionals misdiagnose with adhd because they think "they so hyper" when in fact it is signs of autism. girls usually get diagnosed late due to having different traits of being on the spectrum. Primary doctors not always fully understanding what Autism is and how to screen for it.
Suzannah Iadarola, University of Rochester Medical Center	1) Diagnostic disparities 2) Culturally relevant screening (particularly for those who do not speak English as a first language)
Anonymous	Disparities in diagnosis
Arzu Forough, Washington Autism Alliance & Advocacy	While there's plenty of data on when a parent should be concerned, there is inequitable access to effective healthcare for low income families, especially amongst hispanic and black families. This disparity to basic healthcare leads to lower numbers of screening, diagnosis and early intervention, leading to greater disparity in accessing effective education programs in least restrictive environments.
Beth Rutt, parent	Diagnosis and Screening in rural America is very difficult to find for pre-k thru 12 but next to impossible for adults. Children in our school district are having to wait 12-16 months to get in for testing. Our community is located an hour east and 3 hours north and 2 hours west of larger communities that have resources. A child cannot receive services such as a 504-1 or an IEP without a medical diagnosis. They can in all reality loose a year of opportunity due to lack of ACCESS. I have a son who was diagnosed with ASD at 24 years old. Services for young adults literally do not exist in rural settings. I had to become rather aggressive in my advocacy to get him the help he needed. He has his MBA in Finance and is a great young man but without some case worker helping us I don't see him taking that next step of being sustainable. Case management in our area is not available for him. We have to make access to diagnostic services in rural America a reality.
Carol Bunten MD, The Vancouver Clinic	I feel continuing work on the underlying biological mechanisms of disease is important to develop novel treatment strategies, although the heterogeneity of these conditions complicate the work. Additionally, disparities in diagnosis and early childhood services should be addressed, and NO FURTHER RESEARCH DOLLARS SHOULD BE WASTED ON VACCINE STUDIES.
Nancy Cheak-Zamora, University of Missouri	Disparities in diagnosis for racial and ethnic minorities; Differences in how people interpret early signs and symptoms through a cultural lens.
Anonymous	Diagnosis and screening, specifically for students of color in pre-K.
Anonymous	The Hispanic population is still behind in receiving a diagnosis at a later age than non hispanics. Limited access to parent support that would allow them the opportunity to learn how to support their children at home.
Anonymous	Screening and diagnosis in underserved populations, or multi-cultural populations, e.g. expansion of methods.
Heidi Stewart	disparities in diagnosis across SES and races such as if higher SES than earlier diagnosis for services.
Judy Ferry Rohlfing, M.S. Ed., Ivy Tech Community College - formerly public school corporations K-12 for 26 years	Disparities in diagnosis
Anonymous	The disparities in diagnosis are concerning to professionals and parents. Terminology varies for a very wide spectrum disorder. Especially from one institution to the next. Recommended Interventions tend to be the same so a diagnosis "term" should be simple.
Leslie Zevnik	disparities in diagnosis
LeTreese Jones, The A.F.F.E.C.T Institute	The greatest priority should be to address the gaps in services and policy based on ethnicity. It is widely held that minorities are diagnosed later and not afforded the same services due to financial challenges, disparities in insurance and access to services. Additionally, minorities do not benefit from research as they are often not included in clinical trials as a result of trust issues from the past.
Anonymous	disparities in diagnosis is important to consider as well as access to early intervention services
Michele Tryon, Healthcare provider	Disparities in diagnosis for the underinsured and the undereducated (e.g. knowing what to look for as a parent or caregiver) continue to be a challenge.
Anonymous	Early diagnosis and screening tools are not used in rural and frontier areas. It can take up to 18 months to 2 years for some families to access diagnosis and screening tools in larger cities. It can take even longer if there is a second language or other developmental delays impacting the young child.
Robert Daniels, Children's Clinic, LLC	1. Disparities in diagnosis result in a "Matthew Effect" by which the underserved communities receive a later diagnosis, resulting in a more difficult condition to address. And, these communities lack adequate resources to address even the simplest cases with evidence based treatments. In contrast, affluent individuals can bypass long wait-lists, receive early diagnosis and intervention, and are more likely to receive evidence based treatments. 2. Despite the existence of excellent services, dissemination of these treatments to community settings is quite poor, even to affluent communities, resulting in far less than adequate outcomes for anyone not affiliated with a nation-leading institution.
Anonymous	One of the biggest gaps that I see is how to address services for people in rural areas. Most services, evaluations and research are in bigger areas. It leaves a serious gap for families in more rural areas unless you are willing to drive quite a distance one way for anything. This is quite an issue for families seeking a diagnosis, updates on diagnosis or subsequent diagnoses.
Stacey Ireland, Parent	Disparities in diagnosis
LISA, Special Educator	Disparities in diagnosis. I think that Autism is over-identified in many students, and under-identified in others. There needs to be some agreement between Diagnosticians and I think can be partly met by looking at life activities that are affected by the disability- not just that a student presents as a bit "odd" and has an inability to make friends.
Mary Schmidt	Disparities in diagnosis. My son is in college with a 3.4 GPA but has limited social skills and public safety skills. We cannot get him approved for SSI in order to get into our state's programs and supervised/independent living. He has so much potential but we don't have the financial resources to provide everything he needs.
Samiya Ahsan	There is an immense and probably immeasurable gap in the diagnosis and screening and servicea for people who see a good doctor through private insurance and for people who see residents at medicaid hospitals and then people who have the money to get necessary therapies and people who have to navigate the system for them and find that nothing is covered and available therapies on medicaid really lack in quality. I have had a resident at bellevue hospital tell me my severly autistic child had discipline problems and that i should starve him to make him eat more foods though he had a sensory disorder which made him picky. Autism or any other childhood disability is a bigger stigma if the parents are poor, as there are not enough doctors who care for poor children and a huge lack of necessary quality rehabilitation services.
Maureen Durkin, University of Wisconsin-Madison	1. Availability of low-cost or free, accessible and cross-culturally applicable screening and diagnostic tools and services. 2. Trained workforce to identify and provide services for all individuals with ASD.
Pamela Harbin, Education Rights Network	I'd like to see a priority on autistic black people.
Anonymous	Disparities in diagnosis
Anonymous	I consider the most important priorities and gaps in research, services and policy are that the aforementioned actions are not participatory enough, and that diversity, cultural and linguistic competence and responsiveness in diagnosis and screening is not best or common practice. Families of diverse cultural and linguistic backgrounds are not engaged or included in the design, implementation and evaluation, quality improvement, of such research models, services, opportunities and supports or organizational, local, state of federal policies.
Anonymous	Medical attention for ALL socio economic groups
Michael Hannon	The most important priorities and gaps in research, services, and policy include diagnosis disparities across individuals of different racial/ethnic groups and socioeconomic status.
Michael McWatters, Parent	We need to screen a broader demographic than we currently do. At the moment, middle class and above families, often white, have better access to diagnosis and, thus, services. This is a gap that needs to be addressed.
Anonymous	Disparities in diagnosis continues to be a significant issue. Most samples continue to be White and middle class, highly educated. Samples need to be more real world and diverse, as well as identification is real world contexts that are not clinic based at Universities. Finding ways to screen, identify and provide services to lower resourced, under-represented populations is critical.
Azuree Natice	Lifespan Issues -- effective supports & services, from infancy through adulthood, that treat autistic people & their families with respect, do no harm to them, and help them to lead lives of dignity among the wider community. Disparities in Diagnosis and access to services -- so that people of color and communities with socioeconomic challenges are better able to obtain the diagnostic services that open the doors to understanding, acceptance, supports and services. Respect for Neurodiversity -- moving away from a model that treats autistic people as broken, as needing to be cured or prevented from existing, and instead views autistic people as valuable human beings in their own right, who have their own contributions to make in their ways, who can experience disabling effects of their neurology but should not be treated as defective versions of typical people. Support for the challenges autistic people can experience and treatment for the co-orccuring conditions (epilepsy, anxiety, depression) while respecting that their mode of thinking and being has value to them and to society. Funding and guidelines for professional development for those in the fields of health care, education, social services, and law enforcement -- so that modern research into the underlying neurology of autism and into how autistic people differ in their perception and experience of the world and their response to that can inform the way autistic people are treated by workers in these fields.
Idil Abdull	1. Disparities in developing tools for minority families is almost non-existent. 2. Nonverbal symptoms and why it is more prevalent in certain communities such as the Somali American kids in Mpls.
Anonymous, Autism Society of America	These comments are being submitted on behalf of the Autism Society of America. Unfortunately, we know in 2016 there are still health disparities and profound differences in availability of services and access of diagnosis, and screening in underserved and ethnic minority populations. Overall, we must better understand what the barriers are to reaching these communities and preventing them from getting the adequate help and diagnostic evaluation and help caregivers navigate the pathway from screening to diagnosis to entry into early intervention. Until this gap is closed, we will not see the impact and outcomes for all individuals living with ASD. We must assure that diagnosis and screening tools are available to parents and children of all socio-economic backgrounds and levels. It is critical that we understand the reasons to these barriers such as services being systematically withheld from diverse groups. Because we know early intervention services leads to early identification which leads to an early evaluation and access to services and supports.
Aimee Vitug-Hom	Disparities in diagnosis
Kimberly Perritt, Teacher	Disparities in diagnoses, biological and environmental causes, including prenatal exposure to certain metals and toxins, as well as comprehensive brain scans
Anonymous	Ensuring early, adequate diagnosis of poor and/or ethnic minority children. Differential diagnosis in verbal / average to high IQ adults - there are essentially no tools for differentiating ASD in this population from other conditions.
Joseph Schunk, Parent	Ascertain the reasons for the differences in diagnosis based on race.
deborah weiss	disparities in diagnosis
Kathryn Hedges	Supporting adults over the lifespan is a huge gap. Only 1% of spending goes to lifespan issues, but if 1 in 58 (approx) Americans are Autistic, we have millions of adults who may need support and very few of whom get support. Whether someone needs 1:1 24/7 support or just a mentor to check in with, Autistic adults should not be living in nursing homes, living with resentful family members, living on the street, or living with abusers to stay off the street. We don't even have comprehensive statistics on adult autistics and their needs. Mostly we hear from parents concerned about their children aging out of the school system and associated supports. Many parents are overprotective and insist that their children have to be in some form of congregate care, even though this is contrary to the Olmsted decision, because they don't have safe community options available. We don't need to research autism risks. We need to research the risk of parents murdering their Autistic children and how to prevent it. Addressing disparities in diagnosis is important too. Validating best practices is important too. I'm concerned by the emphasis on ABA when people who had it say it does more harm than good. We should not promote or fund harmful interventions (and ABA is so pricey that the same funds could be distributed further).
Beth Thompson, Milestones Autism Resources	Disparities in diagnosis
Anonymous	Disparity in diagnosis.

Need to increase/decrease early screening and diagnosis of ASD in children

Respondent	Response
stella avcisoy, ARC of Seneca Cayuga	I am a parent of a 16 year old ASD young man. I am on the board of directors at ARC of Seneca Cayuga.I know that one of the most important priorities for ASD children is early diagnosis. I know that a huge, painful gap is the existence of residential homes and jobs after the age of 21.
Stephanie, Mother of 27 yr old autistic son	More children are being diagnosed with autism at an early age just to receive necessary services. The worse label is placed on the child when in reality, it may not be so. What does this do to the parents' or child 's mental health?
Holly, Occupational therapist	This most important is early screening and intervention. Getting therapeutic services, including ABA, speech and occupational therapy, as soon as possible will assist with development at a faster rate. The gap is how a parent is to know when to receive a diagnosis rather than "waiting" to see if the child grows out of the typical red flags seen in individuals with autism
Anonymous	The most important priority is accurate diagnosis and appropriate services as early as possible
Anonymous	Specialist in communities that can provide early diagnosis, thus early services when they count most.
Jennifer Hane	By 12 to 18 months
Joyce Darbo	As a parent that works in the field of special education, I believed that a better early educational setting was just what my son needed and that what he was displaying was NOT autism, even though I knew it was . I strongly encourage and promote early identification and evaluation especially if you have a gut feeling that something is different about your child. Early diagnosis and intervention is the key to better inclusion into the general education school system and life.
JulieKay Dudley, Autism Society of Oregon	There is more need for earlier diagnosis and the means to do it. Most children are not diagnosed until 3 or 4, and the parents are overwhelmed with experts telling them they need early intervention NOW, and no where to turn. If we could intervene at 1-2 yrs, they have time to breathe and make better plans. Still an issue to diagnose High Functioning or Asperger's, and fewer services, because they don't seem to have as great a need.
K Wentrack	Early identification.
Star Ford, Divergent Labs	The push for early screening seems to be in the strong economic interest of the autism industry, as that gives them more years of treating patients who usually do not have a say in it. Sometimes this locks them in harmful treatments that take away a lot of time from childhood. Therefore I urge the committee to recommend later screening and labeling. Children should have the first few years of their life to simply grow as themselves without therapeutic intervention.
IEP parent Advocate	I think that 6 to 8 months is the time to be concerned since this is the beginning of fine and gross motor as well as language.
Brett Gilleo, Big Sky Therapeutic Services, PLLC	Early diagnosis and intervention. Pediatricians continues to push off diagnosis for children under age 3, telling parents to just wait.
Chris	Early diagnosis and intervention.
Ms. G	age 3 to 4, as the terrible two's may distort true personality perception.
Gillian Pilcher, Parent of 2 with high functioning Aut	The biggest priority needs to be diagnosis and screening. Both of my boys were diagnosed after elementary school. The school refused to test one of them twice and we went private with the second.
Jennifer Skjod	The gap I find most important currently in our state and nation, is for adolescents with autism. They seem to completely fall in the cracks of all the programs. They were more than likely diagnosed at a later age (our son was diagnosed at age 7 and is 12 years old now) --so they missed out on all the early intervention. Currently, they are in middle schools or high schools were the instructors have inadequately been prepared with little or no best practices in place. Often, as a result, they end up facing disciplinary action such as isolation or restraint --or worse citations and even arrest by school resource offices for behaviors that are not been addressed appropriately. This escalates the behavior by throwing PTSD now in the mix to where they are often fearful of their education setting.
Anonymous	All information about ASD indicates that early diagnosis and treatment is critical to achieve the best outcomes for those with ASD. In talking to other families there is a great deal of resistance to both testing and giving a diagnosis of ASD to a younger child, especially if they are higher functioning. Despite being diagnosed with both ADHD and Anxiety in the 1st grade, and being under ongoing psychiatric treatment the possibility was not brought up by any of my child's doctors or his school. It was first suggested by another parent at camp the summer before 5th grade and again by a facilitator of a parent support group towards the end of 5th grade. My child finally received a diagnosis the summer before 6th grade, and only because I pushed to have my child evaluated. We need better ways to identify children early so that they don't slip through the cracks like my child did.
Anonymous	Early diagnosis is of most importance.
Marty	1. Lack of access to obtain a diagnosis.
Tami	As soon as you notice any potential signs of autism I would like to see services for diagnosis and screening. My son was in 3rd grade before we put it all together. Even now as he is ready to enter 6th grade, we struggle and could use lots of help to find the right kind of doctor for him to help in diagnosis and ways to help him.
Michael Notaro, University of Wisconsin-Madison	My son was diagnosed right before he turned 2. This early diagnosis was crucial in the amazing gains he has had in communication and in behavior.
Anonymous	I am concerned that diagnosing early may lead many parents to try to stamp out an autistic child's differences. I want research into whether hours a week of compliance-based therapies can actually hurt a young child's emotional development.
Anonymous	My son was diagnosed with ADHD at the age of 5. Early diagnosis did nothing for us. I have poured out thousands of dollars to get my son the help he needs. My son has now spent 11 years in college, received his AA degree in communication and close to receiving his BS degree in Computer Science, I am concerned that there is a lack of help for him to receive proper training to prepare him for interviewing and networking to get a good job. His autism disability falls in the category of not being able to connect with other people on an intimate level, he has difficulty expressing himself and keeps everything bottled up inside. He gets confused about social mannerisms and prefers to avoid social interactions as much as possible. My son cannot afford to live on his own as the current job does not pay well and he was laid off from his first job with Walmart due to their ridiculous lack of communication, management turnover, lack of apathy for individuals with his disability and their scheduling conflicts with his classes. There needs to be more resources to push companies like Walmart and Target to provide better opportunities and better paying jobs for people like him without him having to be afraid he would be penalized by saying that he lives with autism..
Alicia	Studies show that early intervention is key, yet by the time kids are diagnosed its too late and takes too long to learn about appropriate services. 1) There should be screening for infants (no eye contact, missed milestones, no clapping, hitting the nursing mom) 2) The MCHAT should be a standard part of the ECI program. --- We wasted a year trying to do speech therapy with ECI, when he really needed intensive ABA. ---- A huge priority should be made to helping pregnant women maintain proper gut health and supplement as needed for MTHFR gene mutations. Folic acid doesn't cut it.
Margaret Woch	Early diagnosis and family assistance in the form of help with local, state, federal and private forms of services that spans the lifetime of the individual with ASD. Help needs to include assistance in actually getting the resources, filling papers, filing and how/who to call when there are issues.
Michele Hays	Clarifying that services might be warranted even if a child does not meet the full criteria for autism, or that a child who does not meet the criteria for autism at one age might need re-screening later, as social development varies widely.
Rita Pospisil, West Platte RII	As a special education teacher and an aunt to a person with autism, it is very important to continue the diagnosis and screening as soon as suspected, preferably prior to the age of three. Then funding must be made for the treatment and early training for these individuals. It is important to attend to the diagnosis and treatment early and free if needed to often prevent the need for special services past the elementary age.
Balvinder Ghag	Early tests for children with suspected ASD and early support for parents
Susan bernard	Early intervention is important the younger the diagnosis is the better
Anonymous	The earlier the diagnosis, the better. Anything that can be done to make this happen as soon as possible, whether it's through Pediatric physician education/screening or early childhood resources available to all children in all classes of finance/ethnicity.
Anonymous	There are still too many children going undiagnosed until entry to the public school system, some even up to grade six. Most of them are on the higher end of the spectrum.
Amanda	Early signs snd symptoms. Different problems associated with ASD: GI, Eating issues, ect. Treatments.

Better understanding of early signs and symptoms

Respondent	Response
Anonymous	This is very important and I think it goes along with early signs. I find there is a discrepancy between disciplines in timing and identifying those early signs and then screening children. Many are seen too soon and many seen too late- it is very inconsistent! I think its time that we look at the research and all be on the same page so that all who work with this population are using same criteria, based on same early signs and then there are less disparities.
Charles Doran	early signs
Kristy Powell	Early signs and ID of sub groups.
Cheryl Peeples	The research is sorely lacking in environmental causes. We have an epidemic that can only be caused by environmental factors. Also, children with Autism are medically ill and this MUST be recognized. It took too long to recognize the gastrointestinal issues. The early signs of detection is a success story and we need to move on from that. Lastly, there are thousands of children aging out of the school system. Where are the services and housing for adults? Our country is unprepared for the sheer number of Autistic adults.
Elizabeth O. Morejon, AOTA	A baby between 12-15 months who is difficult to manage, cries a lot, may bite himself or others frequently, has difficulty feeding and who has limited communication.
Grace McCusker	Early signs
Anonymous	Early signs and symptoms.
Lindsey Ramus1969	Early signs, screening and diagnosis is probably the most important. Knowing begins the process of helping, guiding and growing. There are huge gaps in diagnosis and screening tools. Doctors are in such a hurry they can miss a ASD for years. It happened to us.
Michael Brackett, Easter Seals	I think too many people are apt to say a child is bad and that is why they are acting out, compared to actually looking into why the symptoms are there in the first place.
Anonymous	Gaps in early signs and symptoms and diagnosis
Suz Swanson	You should be concerned if you detect signs of autism. If so, get the person in for an eval right away. Also, look for the not so prominent signs, such as lack of social skills, not understanding idioms, etc.
Alexandrea Van Der Tuin, Disability Advocate and Wellness Coach who's an Aspie too.	Why don't you change the question to something more productive. Like- What traits make the individual likely on the spectrum? Weather an aspie or not. We want to be recognized for the special individuals we are. Regardless of if we speak, seam high functioning, or anything else. We want to be obviously loved and desired. Not felt like your next project that needs repairing. Or your annoying little kid needing to annoy you. Regardless of what is really happening.
Elizabeth	Early signs and symptoms in higher functioning kids--both of my kids were initially missed.
Mary Pulles Cavanaugh, Thinking Moms Revolution	The early signs......jaundice, "colic", projectile vomiting, trouble latching on to the breast, asthma, allergies, tongue ties, lip ties, and seizures are considered normal and are not being taken seriously. Band aids such as drugs or procedures are given or scheduled. There is no interest in finding out the cause of the discomfort or diagnoses.
Meridith Myers, Tanager Place	There needs to be more education around early signs and interventions. There also needs to be universal coverage for ASD services.
Anonymous	Weaknesses in social language.
Toni Poh, Educator	Children who do not speak are treated as if they will never speak, yet are not given a functional way of communicating. We are told they are autistic, without any other symptoms.
Sarah Hurwitz, Indiana University	Early signs and symptoms
Anonymous	Making people more aware of early signs.
Amber L Perry, ASAN	One should be concerned when their child hits toddlerhood. They should either be evaluated by a Psychologist, Psychiatrist or Medical Doctor, not a nurse practitioner. Early signs may be rocking, hand flapping, failure to focus on stuff, failure to socialize and play with other children, no speech, unwillingness to be held, etc. We don't use the word symptoms because Autism/AS is not a disease. False diagnoses may include Bipolar Disorder, ADD/ADHD, etc.
Anonymous	Early signs,symptoms etc.
Kristie	Early signs and symptoms
Jenny Latham	As soon as something seems off with your child
Tammy G Harrison, Parent of ASD	Diagnosis and Screening: If we could identify ASD, like Downs Syndrome, pre-birth, it would give parents a heads up on what to expect after the child is born.
Anonymous	A child who does not respond to his/her name and does not give eye contact, point to things, or gesture (wave good-bye) by 12 months should be monitored. The first skill is established well before 12 months old. The last 3 are 12-month-old pre-verbal skills, and a child will not speak without them. These signs can be easily shared with the public. They are also signs a pediatrician can easily ask about at the 12 month check-up.
Anonymous	Environmental risk factors. Prenatal testing should be explored.
Alicia	Emphasis should be made in diagnosing under 2. Educating against "wait and see" and getting immediate therapies going, working on eye contact and responsiveness.
Mariluz Sosa	Major emphasis should be done on identifying kids that are no-verbal or low verbal but have normal or high intelligence. These kids are being sent to special education classrooms and schools with low expectations for them. When these kids are taught to use an effective alternative communication method (like typing in the iPad), they can access the standard curriculum and higher education. These kids have the potential to live productive, fulfilling lives if they are identified using appropriate evaluation methods, fully included with typical peers and provided with the tools and accommodations to access regular education.
Anonymous	I think if screening/diagnosis occurs early and educational providers are educated and given the resources to support families in developing life skills and quality of life and integration for their children with autism, it will empower and promote preparedness for the lifespan.
Amanda	Early signs snd symptoms. Different problems associated with ASD: GI, Eating issues, ect. Treatments.

Families need emotional support following diagnosis and assistance in navigating access to services

Respondent	Response
Barbra` Lippenga	After parents are told their child has autism the doctors tell you everything your child will never do than send you on your way with no help and no hope.
Maria Montoya, Enroll Detroit	Diagnosis and screening tools paired with how families can be supported and find support post-diagnosis.
Colette Tarrani	I didn't know what Autism was until my daughter was diagnosed. Family need more support dealing with Autism. Need better treatments. Need parents to find out about help thru the Govt. not other parents! After the diagnosis need better support system so parents know where to go what to do how to treat.
Anonymous	Information for families after the diagnosis
Millicent Leow, Mom	Not enough schools really make an honest effort to be there for families of special needs children. As a parent, I want to see all schools across the country up the ante on how they work with families like mine.
Anonymous	help for families after diagnosis, including counseling for grief, planning, services, etc.
Jenny Nash	I received e-mail updates from Babycenter about milestones and what to expect from the time my child was born. Once he turned 18 months, I realized that we were behind on language. He was evaluated by his Doctor and a local children's hospital. No one could tell that he was autistic. He started to be treated for speech delay through a government program in GA called Babies Can't Wait. Once he aged out, he was deemed significantly delayed by the public school system and admitted to a special needs classroom at the time of his 3rd birthday. We wanted to see an autism specialist, but there was a year wait . Once we finally got an appointment with a supposedly renowned expert, they strapped him into a chair for 2 hours and told me that he was middle of the spectrum because of his subsequent meltdowns. They refused to tell me anything about his prognosis other than they didn't know. The Dr hightailed it out of the room when I started to cry but not before insulting me. An intern asked me how I felt and handed me a packet of information. I went home and cried all night.
Jim, Autism outreach fellowship	Yes early intervention is key , but the cookie cutter one size fits all is not in anyway helpfull and the fight at the first IEP is a night mare! Especially for first timer. The emotion of fighting for what's best and what's legal is a tight wire act that you only can get what is truely best for the child's INDIVIDUAL needs when as a parent is probably to late by the time you learn the ropes.
Lucia Rafala, Parent Of child with ASD	The schools fight medical diagnoses of ASD if the child is high functioning in academics. THey do not acknowledge that the sensory and social language issues impact education and refuse to give services. I was able to get the OHI label but I shouldn't have to. I believe that schools should be better educated on how high functioning ASD still need services to be successful and employable when they graduate and schools are accountable to provide those services. Every PPT should not be a fight with lawyers to get the bare minimum.
Toni Silveira, mother & educator	Services: When my high functioning child was diagnosed, I was left on my own to figure it all out. I was not assigned an "autism" doctor or social worker. I was given a book with lists of help providers. The problem was that I did not know what to look or ask for. My pediatrician knew little about ASD and I had to research everything myself. I also have a comfortable income but I am not rich. I was told that I did not qualify for several programs because I was not on medicaid and I did not qualify for the Katie Beckett insurance that most disabled students received because he was too high functioning. High functioning meant he could speak, feed and clean himself but he could not succeed in school or public because of his sensory and social challenges. We had to pay for all services out of pocket for the first five years which was tasking on our family. I also do not qualify for PASS so I received no help there. I would like you to see that all children on the spectrum need these supports.
Suzanne kollar, Parent	As a parent of a 5yr old non verbal autistic child, knowing what services are available through county, state etc is daunting.
Marsha Salome, Parent to 15yo son diagnosed with autism at 3	Most important priority which is also a gap is parental consideration. To diagnose child with autism is one thing but parents are left to flounder. Where is the help, training, and or psychological help for them which will assist the child on the spectrum? Parents need therapy of some kind to accept and realize all is not lost. They need to be shown how to use the diagnosis as a vehicle for help not a death sentence. Acceptance vs. Denial. Give them info about services in their state..ALL services not just basics.
Michael Buzzard, Parent of children with Autism Spectrum Disorders	More funding needs to be available for research into causes. Looking for Diagnosis our family had to travel to several different regional and east coast hospitals to try to get appropriate diagnosis. Also more time and resources need to be provided to assist families in guiding them in seeking the appropriate resources, treatments, doctors. We had to learn over years of hard work and trial and error to learn to navigate and even we still are very low knowledge in what supports and resources are out there.
Anonymous	It is not easy to get an early diagnosis and treatment for an autistic child. My granddaughter was not diagnosed until she was in kindergarten. Her doctor said some things made him think yes and some made him think no. We took her to Children's Hospital in DC since they supposedly had an autism center and it was basically useless unless you are interested in medicating your child. We finally got a diagnosis from a neurologist and a school psychiatrist when she was in kindergarten. Fortunately she was in a school system that provided her with a lot of services and that helped but information on how to help her was scarce and we had to do a lot of research on the Internet.
Anonymous	improving early access to diagnosis and practical approaches to enable appropriate support for day to day issues as early as possible
Anonymous	The navigation process for families looking for help and guidance is very poor. Services are hard to come by and guidance is needed for families. The time to be concerned is now, when a child is newly diagnosed.

Need to reduce the time to diagnosis by improving service access and diagnostic tools/process

Respondent	Response
Anonymous	It is very concerning that in my state, parents are forced to wait 6 months to a year for an official diagnosis, often missing an important window for early intervention.
Anonymous	Access to initial screenings. There's a very long wait list and can't get services until we get official diagnosis.
Betsy Berman	it takes too long to receive a diagnosis or receive screening and there is a serious lack of services available and lack of coverage for those services by insurance
Delores Goneau	In Virginia the biggest problem is our educational system and the lack of teachers being educated about autism. Both my children were majorly delayed getting help at school because the schools refused to evaluate my son's in an appropriate manner.
K G	We were limited in our area for receiving a diagnosis. We had to go through local services because there is a three to five year wait for a neurological pediatrician. I would like to see an expansion of doctors available if all the local doctors are booked.
Patricia Harkins, Harkins and Associates	There are still doctors who tell parents "wait and see" when children present with symptoms of ASD. Diagnoses and therapy are still being delayed by 1-2 years.
Anonymous	Children receive a developmental delay diagnosis first, and then wait until years later for an autism diagnosis. If autism is the case, the earlier it's classified, the earlier treatment can begin.
Jenna Moser	- Wait times at regional centers for evaluations are far too long - Access to in-home ABA services is extremely strained (no providers available) especially in rural areas. - School districts reluctant and discourage access to services
Michele Thompson, Nebo School District	I'm sure that improvements are being made, however, I see many children who have not been identified as having significant developmental delays (who obviously have them), by their pediatricians during well-check visits. Early identification of developmental delays can be a positive life-changer for a child and their family. When we see children in the community, at PreK testing or Kindergarten who have significant delays yet the parents have never been told there are services available, it seems negligent on the part of those professionals who have been caring for them.
Anonymous	Diagnosis tools have changed, but what would have helped in my son's case was checking for the 1-year-old pre-verbal skills at his 12 and 18 month check ups: eye contact, pointing to communicate, responding to his name. He was not diagnosed until almost 3 years old, and he could have been diagnosed 18 months sooner.
Anonymous	My son is 8 and unless things have changed drastically I couldn't get a referral to an autism diagnosis team until he was 4. Then it took a year to get in so no actual diagnosis until he was 5. The doctors didn't seem to take my concerns seriously. I think any parent who expresses concerns should be given prompt information on what to do next; not to continuosly be put off to the next appointment.
MaryAnn Vericella, Mother	Doctors need to stop telling us parents to wait, that it's too soon. Then by the time our children are 6 and diagnosed it is too late for early intervention
J. H., parent	Inequity of services available (in Virginia, people with the ID label have far more services available than people with autism, due to inequalities in funding for various services); poor behavioral education and training of school and service personnel; inadequate behavioral preparation for parents rearing children on the spectrum; delay in appropriate diagnosis; school personnel questioning or discounting diagnosis; general lack of support or concern for people with autism from their non-disabled peers; lack of vocational opportunities.
Anonymous	I feel the gaps are with the children who require less support. It took me over 4 years to get a diagnosis because no agency wanted to be the one to "label" my son. Those were four years of missed treatments that could have helped him more.
Mayra Zamora	We should make it easier to obtain a diagnosis. Months of backlog for parents seeking an assessment from a psychologist, neurologist, or other professionally trained person that is able to make a diagnosis is unacceptable.
Anonymous	A proper diagnosis comes years too late, despite having met the criteria.

Need more and increased access to genetic screening

Respondent	Response
Sally	A more thorough approach should be taken, at the earliest possible age. There are known genetic risk factors that are often not tested for during the initial diagnosis. In the case of fragile X syndrome and other genetic syndromes families are given an autism diagnosis, often having additional children not knowing there may be a genetic component, not knowing syndromes such as Rett or Angelman (for example) could be the cause. By the time I had the fragile X diagnosis I had already had three children. Even though the American College of Medical Genetics has recommend testing for fragile X since 1994. "Individuals for Whom Testing Should Be Considered individuals of either sex with mental retardation, developmental delay, or autism, especially if they have (a) any physical or behavioral characteristics of fragile X syndrome, (b) a family history of fragile X syndrome, or (c) male or female relatives with undiagnosed mental retardation
Destiny, Mom of two on spectrum	There is evidence that certain genetic markers are associated w/ autism but rarely do parents get to have the genetics tests completed due to insurance not covering it. This leaves diagnostics to being subjective opinions made through observation rather than a more scientific approach. It's hard to determine therapies that will be effective without all of the information.
Anonymous	- extend screening and diagnosis into family (immediate and extended) members as there is increased pre-test probability of psychiatric and neurodevelopmental disorder clustering - extend genomic testing/biobanks including international collaboration; big data analytics; phenotypic correlations
Anonymous	Medicaid doesn't cover all screening that would help with diagnosis. I was referred to a geneticist by a behavioral pediatrician for genetic testing for my child and was denied a test because it wasn't covered under Medicaid or Carelink.
Anonymous	Because the trigger for autistic symptoms can vary greatly, there needs to be more research and screening done on a genetic level.
z, parent (2 children w/ ASD)	I want my two neurotypical children to have access to genetic screenings so they can plan their families and know the risks of conceiving or bearing children with this disorder.
Anonymous	OBGYN physicians have their heads in the sand when it comes to preventing ASD. Our doctor was well-respected, but he had no clue. We had to find out information through our own research when we had our second child. I wish we had the information with our first child (has ASD). All expectant moms in the higher risk groups should be given materials by their doctors before pregnancy that provide guidelines for avoiding ASD. There is a doctor in Florida that has established such a protocol. His protocol should be adopted nationally.
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	Continue to support genetic testing investigations for which the results can determine a course of treatment; Support insurance coverage for genetic testing; Continue to support broader inclusion of populations in studies

Need to strengthen link between initial diagnosis and access to services and interventions

Respondent	Response
Cassandra Stalzer, Parent	there is only 1 developmental pediatrician (last time I looked) in Anchorage and the inability to get early, specialized help may cause a delay in accessing the services that are available. While other medical and behavioral health specialists may diagnose or suspect, they often are not linked or familiar with the network of services that are available.
Kirsten Sneid, Founding member of Autism Society of the Heartland, Bi-State Autism Initiative, Advisory Board of K-CART and former Advisory Board member of The Thompson Center at MU	The lag between diagnosis and initiation of services is far too long. A Rapid Response treatment program should be started immediately. If this was childhood leukemia or juvenile diabetes these kids would be dead or maimed. The faster effective intervention starts the greater chance to arrest further regression.
Anonymous	Time period from dx to starting behavior services is ridiculous. Took us six months of every agency doing their own screening before our daughter actually started therapy. When you hear that every day counts in brain development it's frustrating to watch the months tick by.
Anonymous	Too much time lapses before services starts fm the processing of paperwork and getting authorizations services need to start asap not 2 months later and it has been proven that 4 to 8 hrs of aba is effective not the minimum of 2 hrs a day!!
Karen Connelly, 2 children in the spectrum	I think that all pediatricians should have the appropriate information on how to refer a child with Autism to a Providing Agency in order to receive therapy as soon as possible. In NYC the option we are given is dial 311 to get to the Dept. of Mental Health and Hygiene in order to receive Early Intervention services, but when you do your are guided to a voice mail that is full and cannot even leave a message . Early Intervention phases out at 3 years old. The diagnosis from the pediatrician may be at first for speech delay or something less serious at the age of 1.5 by the time you get through to EI your child is about 2 1/2 - almost ready to phase out. A child with Autism often requires a couple of months before the therapist can even break the ice. Even if you are fortunate enough to get a Providing Agency on time they usually make many paperwork mistakes which creates a lot of unnecessary delays. I don't even want to mention the OPWDD process (nightmare) also due to the government agencies in place designed to help usually screw you up. I personally work in payroll and put 100% more into getting a paycheck out to a person then these agencies do care for a special needs child. Everyone is in it for the $. Aside from some great teachers and therapist I was blessed to come across. God forbid you are a working Mom.
Anonymous	Pediatricians need to be educated and refer to early intervention resources. Early intervention must be available with all languages and support services. Insurance must cover early intervention services for all disabilities.
Tamara Ratley, Principal at CEC-North	Medical vs educational is a huge gap. I'm a principal in a school where all students have an ASD identification medically. I'm a parent of 2 children who have ASD at very different levels. Medical persons tell parents what they should do educationally- and they do not know what they are doing bc their training is in medical not educational.
Jackie, Parent	Services for children after the diagnosis. Educating teachers and schools about Autism. Finding the right education for children with the diagnosis. A wide range on spectrum and people do not understand the invisible disability. We have information showing Autism is on the rise, we need to find adequate placement and lump them together.
Zoe Goodblanket, Grandparent	Diagnosis as early as possible is critical for education and treatment.
Anonymous	Medical professionals should offer support to families with a recently diagnosed child. Most families are never informed of their options or referred to outside specialists.
Melissa Haney LMFT, CCMNPN	As the behavioral health care manager at my place of work I assist parents' whose child has received an ASD diagnosis navigate through the system. Apple Health recipients are usually on a wait list for a year and a half before they begin to receive ABA therapy. All research has shown that if a child begins to receive this before age 5 their symptoms are significantly reduced, yet there are not enough providers to allow these children to receive these services in that time frame.
Rachel Ealy, High School Teacher	age 3 if child is not making developmental milestones and seems socially unaware, the child should get screened and receive immediate early intervention which should include speech therapy.
Jim Wurster, New Avenue Foundation	The gap is with services that will be provided upon diagnosis and identification.
Anonymous	Early diagnosis helps families access information and guidance to know how best to understand and work with their child. A diagnosis should be given when asd is having an impact on their daily life and wellbeing
Wendy Fournier, National Autism Association	Upon diagnosis, thorough medical screening should be conducted to identify and immediately begin treatment of common medical co-morbidities in individuals with autism. These include GI issues, sleep disorders, seizures, food sensitivities, immune system, mitochondrial and metabolic disorders.
Anonymous, Pittsburgh Center for Autistic Community	1) Appropriate and timely diagnosis is essential for providing therapeutic and environmental supports for autistic persons. The majority of currently available screening tools are aimed at identifying young children. While we applaud ongoing efforts towards early recognition, we also urge policy makers to recognize that numerous individuals grew up during decades in which, or immigrated from places where early screening was not available. These individuals have just as much to gain from diagnosis but there is a dearth of standardized/well tested screening measures designed for adults. Likewise, our current diagnostic measures are also poorly optimised for assessing adults, particularly adults without comorbid ID and those belonging to certain minority groups. 2) Disparities in diagnosis of developmental disorders within racial and ethnic minority groups: There is a large need for improved understanding of the barriers that lead to the decreased and/or delayed recognition of autism in minority groups. Once these factors are better understood, they may be more directly addressed through public health initiatives.
Leslie, Maryk	The information available is better thanks to Google! The medical community needs to get on board with having referral information readily available; patents are in shock after the diagnosis & actually having someone contact them gets the ball rolling. Parents can be in denial & prolong the potential recovery opportunity.
Jenny Latham	Services need to happen asap after child is diagnosed. 1
Erin Fallon, Teacher and Parent	There is a major gap between the services provided by early intervention and the public school system. The programs do not address the needs of the children. Some counties only provide a three hour program for the pre school disabled. The delay in services would be greatly reduced if the doctors had a separate visit that only addressed developmental delays . Having a knowledgable staff member conduct developmental screenings and consultations may encourage parents to seek early intervention services.

Practitioners need to listen to and consider parent concerns about early signs and symptoms

Respondent	Response
Anonymous	There needs to be more emphasis on professionals trusting parents when they say there is a problem!
Anonymous	One of the issues I encounter was that for over 24 years I was pretty sure my son was autistic due to sensory and behavior issues yet due to other developmental disabilities my input was ignored and brushed aside.in total they tested him 6 times, the last was about a year ago after a psychology evaluation when they diagnosed him and referred him to the autism clinic. Parent and caregiver input is crucial to listen to
AM	Misdiagnosis. Parents pushing to get a label and doctors not sticking to what the DSM says.
Wazma, mother of two autistic childern	gut feeling, something is not right about your child
Bonnie Hawkins, Parent	I kept expressing concern to my child's doctor. He kept wanting to wait. Finally at 20 months he referred us to District 19 for services (speech, PT and OT). It wasn't until after she was 2 years old that I was given a referral for a developmental pediatrician that diagnosed her with Autism. She started an early intervention school program a month later.
Leslie, Maryk	When your child does not meet growth milestones or regresses from mastered milestones. Trust your instinct that it is not right; the medical community needs to act immediately instead of "wait & see" if they catch up.
Lynda Domina	Doctors need to listen to the parents. My son was only recently diagnosed at 24 yrs old. Most of his life myself and his father believed he was autistic. No one listened. He was tested 6 times. A waste of time and funds.
Anonymous	My son had signs of autism very early on (less than 1 year old) but the pediatrician would not listen to me and did not screen him for autism. The doctor told me he is just a boy and will grow out of it. I wish I had known I could call the Early Intervention program on my own. He was eventually diagnosed with ASD but years later.

Parents and caregivers need greater education so that they can recognize signs and symptoms

Respondent	Response
Anonymous	I feel like pediatricians should educate families on what autism is. In our case it felt like they didn't want to broach such a touchy subject. I wish they would have suggested testing sooner as we could have accessed service sooner. I was the one who suggested the evaluation, they simply agreed. No genetic testing was done, only evaluation of behaviors and reporting by us.
Anonymous	I am thankful for all the emails and books and facebook comments that help me understand my granddaughter asd diagnosis. My concern at this early stage is her great desire for friendships with peers her own age. Her homeschool group as been a tremendous help to her and to me.
Melissa Friesl, parent	I really wish I would have known about screening at an earlier age. I think education about early signs is so important. My son did not talk until 2 years old, and there were so many other signs that I was not aware of.
Nancy Roberts	Public education on early signs and the variant of the spectrum
a	General public should be educated about ASD so that parents can recognize signs without stigma and take their child for diagnosis. Fear of a "label" still prevents families from getting the help they need.
Behavioral Specialist consultant	More research needs to be done as to causal relation. Also, more outreach to perspective parents as to known issues that can affect neurological development.
Glowyn Roughton, Emg consulting	Services, parent training
Eugenia Bednar	Not enough attention given in the school setting to identify children with disability issues and the best way to address those issues. Not enough training for the parents. My children are 28 and 18. My son (28) fell through the cracks because issues were not rpoperly identified and handled back then.

Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce

Respondent	Response
Anonymous	increased education for pediatricians and primary care physicians. My sister recently encountered a pediatrician who had no idea what Asperger Syndrome was.
Anonymous	Pediatricians and family physicians need to be trained to recognize the signs of ASD and ask the right questions when screening young children in wellness exams.
Cathy, Parent/Conservator	Make doctors aware of what autism really is.. just saying oh they will out grow it or they don't have it because they have too much eye contact or they are too smart in such and such an area...they are not looking at the whole picture sometimes and the child doesn't get the help they need as soon as possible.
Cheryl Fortunato, Parent	My child is 19, so back when he was a toddler the pediatrician placated my concerns. I do recognize that the early signs list is now being used by physicians, however; that is a first line of offense. Specialty doctors still take way too long to connect with and there are not enough good providers to offer intensive services like ABA.
Kelly Ison	Early signs, symptoms and biomarkers. It is important for Pediatricians to be more aware of these signs. It can be very difficult for parents outside of big cities to find developmental pediatricians that can help parents get the help they need for their child early on.
Janice Rushen, parent	I believe the most important priority should be early detection. My son was not diagnosed until 6th grade. In third grade a teacher noticed signs but did not inform me. I think we need to teach what to look for and how to help and where to get assistance. I truly believe the early the diagnosis, the better it will be for the child.
Linda Austin	A person should be concerned when they first notice a child not relating well with other children, not wanting to be held, having uncontrollable outbursts. The sad thing is that most Dr's do not recognize it and thus diagnosis and treatment is delayed.
Anonymous	Well trained pediatricians and other providers who can refer those with symptoms to appropriate services. Pediatricians are still not well versed in symptoms and signs.
Lisa	Pediatricians and childcare workers need to be educated and not afraid to broach the subject of a suspected disability with parents.
Loretta Longo	The largest gap that we have seen so far in our journey is early screening tools and diagnostic familiarity by medical professionals. Our GP pushed off our concerns at the 9 month, 12 month, 15 month AND 18 month appointment and our story is the norm, not the exception. It wasn't until I sought out EI on my own, and scheduled an appointment with a developmental pediatrician that we got somewhere. It should be the norm that all practitioners are "up to speed" on early signs of autism and have a list of people/specialists to refer families to. It's better to refer out and have it be nothing than miss the important early window where services could begin.
Helen Angela Mezzomo	I am concerned with the "educational" diagnosis that appears to over-identify students as having ASD. People who are, frankly, not qualified to make a diagnosis regarding a neurological disorder are making this diagnosis on a regular basis.
Anonymous	Physician awareness and training is still very inconsistent, with many pediatricians taking a "wait and see" attitude regarding screening instead of recognizing the value of intervening early.
Bonnie Polakoff, Educational Advocate	In my educational advocacy practice, I've found that many kids who are high functioning are not identified until they're in their teens, despite many symptoms and signs of having ASD. By the time they're diagnosed, it's because depression and anxiety have taken over their lives and not because of the ASD -- the ASD becomes secondary in terms of treatment and services in school. There need to be better guidelines for MDs in terms of diagnosing ASD in young children and much better guidelines for schools in terms of services that are necessary for kids with ASD. Access to medical professionals who can diagnose ASD -- huge issue. Many pediatricians are simply not knowledgeable enough to diagnose ASD, which as we know is a spectrum disorder. If a young child is severely or moderately affected, ASD can easily be recognized and diagnosed. Higher functioning ASD is not as recognizable and I'm seeing more and more of it at older ages -- teens -- when it should have been recognized and diagnosed much earlier in the game. There is a huge need for pediatricians to become more knowledgeable about all the signs and symptoms and not just the most prevalent ones.
Wendy	Education needed for those in medical profession, doctors, nurses, etc. I usually have to explain my son's condition to them, especially PAs and nurses. Until the professionals learn more, there is not much we can expect of them.
Amanda C Nicolson, California Autism Center	1. Pediatrician Training! Research shows early treatment is most successful yet children are continually referred for services much later than ideal. Treating before age 3 is evidence based as best practice - this rarely occurs. High functioning autism cases (severity level 1 = DMS-5) often do not receive fair diagnostic evaluation causing them to seek treatment later in age when behavior problems are more severe. 2. Funding for all services - especially programs for older children, youth and adults.
Anonymous	Gaps in training and expertise. We in the Highlands of Scotland lack both. There is a tendency for local health authority not to refer out of area in complex cases and unless you child has typical autism then they fail to diagnose. In my sons case the ADOS showed suggestive of autism but for years I was given attachment and my parenting blamed. Even after ADOS CAMHs still wanted to explore attachment we had to go out of area after I lost confidence in outlet local area. Years of wasted time we now have a diagnosis of ASD/PDA.
Betsy Cohick, IU 13/parent of adult son with autism/ID	I believe the community services are getting better at identifying autism but we need to keep doing research to improve in this area. We need to continue to make sure our physician's and our medical schools continue to receive education in this area.
Anonymous	All doctors should be well informed about sign and symptoms so earlier diagnosis can be made. Our pediatrician kept ignoring my early concerns and in fact the county WIC nurse is the person who made me aware of a preschool screening that just happened to be the next day!
Christine Lai	Pediatricians need to be better educated about the signs and symptoms of autism. Too many doctors assume it's a new mom's overreaction and fail to take her comments/observations seriously. Pediatricians also need to be better educated about options for treatment. I had a pediatrician suggest chelation to me without any understanding of what he was suggesting or the dangers posed by such a treatment. Even legitimate doctors continue to promulgate treatments that have no proven efficacy. It's not just the job of developmental pediatricians to be informed about autism!
Molly Whalen	We need to be focusing on educating the medical community and health care providers for early identification and screening. Too many parents with diagnoses often say, "I knew there was something not right, but my doctor... healthcare provider... told me not to worry"
Anonymous	Why is there is such a large range of skill sin an autism diagnosis? The range is too broad and the diagnosis is possibly being over used.
Mariah Hahn, Rensselaer Polytechnic Institute	As a biomedical researcher and a mother of a child with regressive autism, I believe that most of the early signs are already known to most pediatricians. HOWEVER, 1) the consequences of repeated doses of antibiotics on the microbiome and on autism symptomology, 2) the fact that severe disruption in sleep patterns can be an early indicator of developing autism, 3) the fact that increasing evidence indicates that mitochondrial dysfunction is associated with autism - these facts are not known to most pediatricians. Pediatricians also need to be made aware of early treatments that can potentially improve autism symptoms - these include B12 injections.
Anonymous	Pediatric doctors need to be fully trained in what to look for - this includes older doctors who may not have received training in med school. They also need to fully understand the importance of recognizing and seeking services as early as possible. I was shocked that my child's doctor's intern had to ask what autism was and even more shocked when his explanation was simply that the child was 'off'.
Irena Koshuk	I clearly see a devastating lack in coordination between such specialties, as neurologists, psychiatrists, endocrinologists, environmental science, and psychologists. There is a tremendous need in creating a Comprehensive Research Institute, on a national level, for screening and finding a clue for screening and treatment of the Autism spectrum disorder.
Karen Zastrow, Parent	Pediatricians need to be educated on screening tools and early signs and symptoms. My pediatrician was resistant to making the diagnosis or sending us to a specialist to have a screening.
kimberly lockhart	It took two years for my son to get his diagnosis. That is valuable time when early intervention has been shown to increase a child's chances of overcoming many of the challenges that come with Autism. It wasn't until he was 4 that his pediatrician even suggested there might be something wrong. I've also known too many parents with more than one child on the spectrum because they didn't know they're was a problem with their older child before they'd already had the second. Doctors need better information and methods on how to screen and what signs to be looking for.
Anonymous	Pediatricians need more education in diagnosing and treating autistic children. More quality mental health care is needed for autistic children.
Monica Rojo	Practitioners do not usually screen for co-occurring conditions to get appropriate treatment. For instance my child has motor skills problems but feel this issue has not been properly addressed by his pediatrician
Anonymous	I see a lack of understanding and education of some pediatricians when it comes to screening early for autism. We were fortunate with our pediatrician suggesting screening early, but we know friends and family whose pediatricians held a "wait and see" position when it was clear to the layperson that there were developmental irregularities. Continuing to expand general public awareness of early signs and symptoms of autism as well as what Autism Spectrum Disorder is/means is another crucial piece I've seen missing, which create many unfortunate misconceptions about what autism is and isn't. When the general community doesn't have an understanding of autism, there's a lack of community support for families who haven't yet started the diagnosis process, are going through the process, or have just gone through the diagnosis process (and beyond).
Lindsay Sherwood	We need pediatricians to have a better understanding of ASD. More screening tools need to be used at check-up appointments and referrals should be made as needed. We also see many pediatricians referrals when it is not appropriate. Speech delays do not necessarily mean ASD.
Melissa Sigel	1. Primary Care Doctors require specific training on identifying developmental delays at an early age, and information on referral sources for these children. The M-CHAT is a good tool, and is free. 2. At this point Medicaid in Arkansas will not cover mental health services for any child with autism - even if that person has a co-morbid diagnosis such as anxiety or depression. This results in children who desperately need mental health services being unable to get them. 3. There needs to be more clarity about how Autism is diagnosed. At this point Medical Doctors have been slapping this label on children without doing formal evaluation which, in my opinion, is unethical.
Michael Beauregard, Father of son with Autism	One area that could definitely be improved would be screening/recognizing early signs, and training of healthcare professionals. Our son has a great Pediatrician, but he had told us to wait a year and give our son some more time before we sought out a screening for ASD, as he may just be developing language skills slower than his peers. My wife did not want to wait the year, and contacted an ABA group who set up a screening. He was diagnosed with Autism and the group then helped coordinate his Early Intervention, ABA, and IEP in pre-school. He's doing very well but it scares me to think how much he would have been deprived of if the process of assistance had waited an entire year before beginning.
Anonymous	Pediatricians should be made aware of how to diagnose a child with autism in its early stages. Especially in rural locations
Robin Havens, parent of someone with autism	More pediatricians should be better trained to identify young children who have autism or are at risk for developing autism.
Anonymous	It is vitally important that clinicians are aware of indicators of autism. This may seem like an obvious comment but our CAMHS team never recognised my sons aspergers for four years. Our ASD team and paediatrician spotted it within the first ten minutes.
Anonymous	There should be more education via healthcare professionals on early signs of ASDs, so parents understand the benefits of early screening.
Donna Miglino, Parent	Better training for current pediatricians. In my experience, they were useless.
Anonymous	It's know that people born with heart defects have a higher chance of being diagnosed on the autism spectrum than people in the general population. Yet, cardiologists or neurocardiologists who understand the connection are extremely rare. More needs to be done to train cardiologists and neurocardiologists to address this issue.
Anonymous	More pediatricians need information and training on early diagnosis and screening tools. Access to online or in person seminars and trainings should be available and increased. Early detection is so important.
DOROTHY LOTT	DOCTORS KNOWING MORE ABOUT THE SYMPTOMS AND HAVING THE RIGHT KNOWLEDGE, AND CORRECT DIANOSIS AND SCREENING TOOLS TO MAY THE RIGHT DIAGNOSE TO BE ABLE TO GET THE CORRECT HELP EARLY.
Anonymous	- Medical providers and preschool/childcare providers need to be better educated in signs of ASD and follow consistent best practices. - Outreach and better access to services need to be provided to children in disadvantaged socioeconomic circumstances.
Anonymous	Educating pediatricians about the MAPS program, so they can refer patients. Medical Academy for Pediatric Special Needs
Eileen Nicole Simon, conradsimon.org	My first two sons suffered head injury and asphyxia at birth. My second son was also very jaundiced for several days after birth; his eyes appeared to be brown until the jaundice cleared, and after that his eyes were blue. My first son was delayed in rolling over, sitting up, crawling, standing, and walking. He was diagnosed with cerebral palsy at 20 months of age. This diagnosis was changed to autism at age 4. He appeared to overcome his physical handicaps, but his speech consisted only of phrase fragments with reversal of pronouns. My second son did not have motor delays. However he never crawled on his hands and knees; he scooted around on his belly. He began walking at 14 months, which I now believe could be regarded as delayed. Our smiling pediatricians told us we should not be worrying; we should not be reading, and should not be comparing our children to those of our friends. One pediatrician told me I did not have the technical competence to read the medical literature. I had just received my masters degree in mathematics, wishing my brilliant math professors could take an interest in the neurological problems of autistic children. Child development has been extensively described in books by Arnold Gesell (in the 1930s), Benjamin Spock, as well as many women's magazines. The idea that pediatricians need training to detect signs of autism is ridiculous. They must be taught to discuss the truth about developmental delay with parents.
Anonymous	Mainstream pediatricians do not have any knowledge on or any desire to lol earn about autism. They are too overwhelmed and big pharma and the AAP has done ignored all environmental and medical causes of autism.
Alexander Frazier, Director, Autistic Reality	When diagnosing and screening, treating the individual who is being diagnosed and screened as a human being worthy of respect and dignity is paramount. Autistic individuals are not lab rats. Also very important during diagnosis and screening is not to treat autism as a problem or a defect. If you treat diagnosis and screening as if you are looking for a sickness or disease, then you are attaching unnecessary stigma to both the condition and the individual being screened and diagnosed. Autism is a form of diversity, not a sickness and not a disease. Autism does change the way that individuals act and think, but it is not a defect if properly accommodated and/or perceived. If you are a parent and/or a guardian suspect that autism must be an issue, then observe, check the sources, and check with a medical professional who will put your child's needs first. Please make sure that your child has input and understands what is going on. Please impress this upon your child even if your child is nonverbal. Nonverbal does not mean stupid. Please understand that autism is widely varied, and no two cases will be a like. It is important to note that no one source will be able to nail things down for you concretely, and researching from multiple sources is important. In addition, no one person, no matter how knowledgeable, knows everything. The only person able to make it concrete diagnosis should be a licensed medical and/or mental health professional.
Lisa Falke, Commonwealth Autism	Better training for pediatricians and psychologists around early indications of autism and more research to isolate pivotal skills to target during early intervention that expand functional social skills
Anonymous	Honestly? Where to start. I consider myself an educated person. I did so much on my own after my son was diagnosed 6 years ago. I think there needs to be much more education on resources -- who to go to for what... how to prioritize all the child's needs. I have found my way (mostly) but it is really hard in the beginning when you are on your own trying to figure out everything.... Then I would follow this up with educating the doctors/panels... they should be telling parents of the newly-diagnosed where to talk to other parents, where they can look for answers to questions, etc. I can't reiterate enough that parents need to know where to go. As a mom with a very strong gut feeling, I was dismissed first by other parents, then my son's own pediatrician.... Finding out where to go was ALL my own effort. Once I found ONE right therapist, she led me to the others but it took far too long to find the first person to help me.
Anonymous	Pediatrician offices need to have parent/advocates available to help parents when a child is diagnosed. .
Marcia Gray	Getting information out to Doctors about what this looks like (and how it looks different in girls than in boys) should continue to be a big push. I have several friends who have had their pediatricians brush off concerns or even pull back on a suggestion of possible issues ("oh, she's now speaking at three, so you have no reason to worry about her late physical milestones, gastrointestinal issues, sensory issues or interest in peers").
Jennifer Kiney	Arming pediatricians with information, things to look for and questions to ask, that go beyond a screening checklist. New parents want their children to "do well" on those checklists and their answers may convey no issues when there are. Same for childcare providers.
Brenda Messex, Parent & Personal Service Worker	Too many hospitals don't have protocols in place for all specialists to review/see your child at one time. And taking your child in separately means each specialist believes your child falls under THEIR specialty
Cheryl Miller, Parent and teacher	The one major issue is the there are lots of services that are out there to help but: The school's will not let these people in to help the students. The schools are not doing there job of screening and catching them early. We want our behavior aide that we pay for to be in the school since this is where the most socialization is taking place and the place the children spend most of their time. The school district is refusing and the kids are falling behind, not because they are not capable of the learning but because their behaviors are getting in the way and the school aide are not trained in behaviors and cannot help.
Dhinesh Krishnaraj, TACA (Talk About Curing Autism)	My pediatrician didn't say any words about ASD or doing a check list for signs related to that till my son turned 2 years, we had switched to another pediatrician and they immediately found the issue, it should be made mandatory for all pediatricians to do the check up by 1 -1.5 years of a kid. - it should be a law.
Rachel , Waterson	Definetly more training for the primary care physicians to be able to spot signs in children as young as possible. My son's PCP didn't know the signs when it was clear something was off. He didn't respond to his name or point to objects. He didn't babble like other babies even though he did laugh. This was under a year old. Now he is 9 years old and still non verbal. Help was delayed because of this.

Improvements in the accuracy and usability of screening and diagnosis tools

Respondent	Response
Alexandra Tien, MD	I am a physician and a mother of a son with high functioning autism. We knew from early infancy that our son was different and given that he had the classic triad of symptoms--social/motor/language--we suspected autism. We had him evaluated twice by developmental pediatricians by the time he was two. He was dx'd as develpmental delay/language delay. Re-evaluated him at the beginning of middle school when he struggled with the increase in workload--dx'd w/ADHD and then tried on stimulants which only caused his anxiety to spike. It took 15 years to get what we suspected all along was the correct dx. It would have been better for our son if he had the sorts of interventions recommended specifically for autism from a young age. If we had such a hard time I can only imagine how hard it is for the average person to get an accurate dx of a loved one.
chloe dansinger, grandparent of six year old boy with high functioning Autism	diagnosis
Tonya Cummings, parent	Accurate diagnosis and immediate treatment (funded by all insurances, including private) for all. Anything else is just extra and nice to know info.
Anonymous	Diagnosis and screening riils
Anonymous	Both early diagnosis and accurate screening tools are hard to come by when the criteria for each disorder continues to change.
Annette Bradshaw, Parent/Speech-Language Pathologist	Still a subjective diagnosis which delays acceptance for some families.
Neva Parkins, Parent and Advocate	The ability to get a diagnosis has been a huge challenge for my family. I would like to see screening tools be implemented to obtain additional information when a person exhibits many symptoms, but also has a high number of protective factors, which results in a lack of diagnosing a person accurately
Robin K. Blitz, MD, Phoenix Children's Hospital	Increased quality improved projects for PCP's to screen for ASD and other developmental disabilities .
Trish Bawn	Diagnosis and Screening tools
Danny Raede, Asperger Experts	Diagnosis and screening tools
Darlene Upson	Our daughter Taylor showed signs of Autism at the age 12 months. I had her tested but was told she was fine according to the guidelines and numbered measurement. I depleted my savings to provide therapies for her. After a year I took her back in for testing and she barely scored on the scale. Maybe the measures could be lowered or adjusted for children who score at guideline for help or assistance from state nationally funded programs.
Anonymous	The checklists used for asd are too subjective, almost anyone could qualify with the measurements we use to meet criteria in schools. Students in our school are being over identified with Autism. Students that used to qualify under ebd, ohi, and tbi are now being identified with Autism.
Anonymous	Research in to the causes and possible environmental factors causing autism. Also, insuring that there is more valid diagnosis and not misdiagnosed.
Jenn Carerros, Mom of a child with autism	screening tools
Anonymous	diagnosis and screening tools
Anonymous	diagnosis & screening tools
Kristen Goodman, Board Certified Behavior Analyst	The Ados, Mchat and ADI-R are not flagging infants at risk for ASD because partially due to stereotypy being difficult to detect in infants. All infants move repetitively, but what is the normal range and what is autistic type movements?. BCBA's do functional behavior assessments on stereotypy all the time. We need more research on the efficacy of FBA's on infant stereotypy. We need a good idea of typical movement and atypical. More research is needed in this area.
Anonymous	Diagnosis and screening tools, specifically policies within the AAP and other pediatrician accrediting or oversight divisions which MANDATE referral of children with multiple major markers on the screening tool for autism assessment.
Marilyn Arons, Melody Arons Center of Applied Preschool Research & Education	The current DSM V provides an inadequate definition of autism, whose criteria must be changed. Current research agrees that children with SPD, hearing loss and apraxia, show many of the same symptoms as those now used for autism. Over diagnosis of autism may be attributable to these other diagnoses rather than autism, which strongly impacts on the treatment selected. Additional tools must be developed as well as an improved criteria for diagnosis, based upon neuroscience rather than observation.
Brynda, Parent of an autistic child	The actual identification of autism. Since it is only by observation those who are mild are not taken seriously.
Parvati	I think too much emphasis and funding is being given to being placed on diagnosis and screening tools when there is not enough research and funding for treatment options, educational options for already diagnosed ASD kids and no roadmap for what to do for adults with autism as they age out of school.
Anonymous	Priories should be diagnosis and screening tools. They should researched based and valid. There should be a narrower criterion
Sara Kleber-Lowery, Centerstone	There doesn't seem to be any kind of widely recognized diagnostic tool. The medical community has their markers and screenings but when a family attempts to get an autism spectrum diagnosis recognized by the education system and those managing IEP's they seem to have their own separate set of criteria that do not deem the medical diagnosis sufficient enough to qualify the child for supports or services with in the school.
Parent	Diagnosis and screening as it has existed and exists today is far too subjective. There needs to be more effort put into research that identifies the genetic components or other factors that cause autism so that definitive early screening can be done. Identifying the root cause also leads to step 2, crafting a way to treat or repair the defect and eliminate the symptoms.
Steven Graff, Ph.D., Tri-Counties Regional Center, Oxnard CA	screening instrument sensitivity is poor. inter-rater reliability on screening and diagnosis is poor, often driven by desire for services for non-autistic individuals. Also mental health agencies don't want to serve comorbid mentally ill persons with ASD. ADOS/ADI-R overused and overemphasized as being "gold standards" when really not that sensitive. DSM5 criteria are so broad as to be almost useless. DSM IIIR was great!
Lacee Parod, Parent/school employee	Diagnosis and screening tools. It's easy to screen but hard to get a definitive diagnosis in Oklahoma.
Jane O'Grady	Screening tools covered by medical insurance, especially since school districts are not equipped to handle these screenings (often neuropsychological evaluations are given and scored by pupil personnel who are not licensed to do these tests. Gaps in research need to be applied to current individuals with autism. Too often you are asked to participate in a study and not given results or how it applies to your autistic individual(knowledge is power). There are not enough services able to financially assist families with costs of care. The IRS should not audit you and treat you like a criminal if you need child care for a disabled child or young adult.
Katie Romans	I think there needs to be a more uniform diagnostic process. Too many children are being diagnosed based on parent report for symptoms that are not necessarily indicative of a disability, but rather personality differences or lack of parenting
Tita	receiving proper diagnosis and screening and having speech therapy and OT therapy
Christine DeHaven	My son was DX late because I was told boys just develop later than girls
Anonymous	Funding should be given to neurologists to try to make brain scans more easily available and less expensive, because diagnostic methods based on observation and self-reporting are less reliable.
Brian Kelmar, Parent of son with ASD	Diagnosis and screening tools
Jennifer Burke, parent	Priorities: -services for all ages, including adults -effective diagnostic sreening tools that can be used by schools and day cares to identify very young children -research on causation/genetics, but please NOT vaccines
Shannon Des Roches Rosa, parent	We need the re-proportion our focus (and research into and policy funding) into better diagnostic tools to find and identify autistic people of all needs, races, cultures, and genders. That means deeper investigation into and better understanding of autistic traits including but not limited to sensory issues, motor issues, learning styles, communication issues (including early access and support for diverse alternative and augmentative communication methods), and how to accommodate individual variations on those needs.
Neil A Snyder, American Speech-Language-Hearing Association	With only 20% of children with ASD being identified by three years of age, ASHA urges you to include research on the accuracy of broadband screeners. Autism-specific screeners use parent report and/or interactive observational measures. Screeners with high sensitivity and specificity that identify early signs of behavioral, cognitive, and communication impairments (e.g., those sensitive to identifying nonverbal signals, lack of interest in faces, and lack of joint attention) are critical to accurate and early diagnosis. We suggest the following research priorities. Research designed to 1. Assess the sensitivity and specificity of existing assessment screeners/tools to improve the accuracy of early identification of ASD. 2. Develop sensitive, valid and reliable outcome measures for the ASD population: a. Measures of social communication, behavior, and conceptual learning are especially needed for pre-school and school-aged children. b. Measures designed to examine an individuals' engagement in social and community activities (i.e., Participation as defined by the ICF) across the developmental stages are especially needed to track progress from early childhood through adulthood. 3. Research designed to assess the efficacy of treatment approaches to determine which intervention(s) yield clinically significant improvements in speech, language, and social communication. a. Research designed to identify which interventions are most beneficial for which sub-groups of individuals.
Jim N, Parent of a fomer toddler diagnosed with autism	Diagnosis and screening tools
Julie Cadman, Healing Complex Kids	Autism is curable, and still today, MANY families are told there is basically nothing they can do. I believe there needs to be better screening tools and information that doctors and medical practitioners can immediately provide families to help them get started on a treatment plan.
Anonymous	Again, please improve screening for all ages,
Anonymous	I think there are gaps still in diagnosis, that is probably dependent on the biology question. I hear that many, affordable diagnosis are still checklists of symptoms. I knew a family member that was falsely diagnosed with seizures and then given hurtful meds, changed to motor ticks, and then considered just a behavior choice. It is clear that it was stemming, or flapping.
Anonymous	In my limited experience over the last seven years, it appears as though a significant majority of the ASD diagnoses are based on parent and teach questionnaires, as well as observations by qualified personnel. With the use of such tools, it is possible that nuances in individuals' presentation are being overlooked and that co-morbid disorders are not being identified. Additionally, there are at present very few alternative explanations for why an individual would present as rigid thinking and with diminished interest in or display of social skills. This may be contributing to over-identification, or mis-identification.

Better recognition and diagnosis of subgroups

Respondent	Response
Carolyn Hyman	Out of those, I would say identification of subgroups. Also, the problem with high vs. low functioning. High functioning does not mean high functioning across all levels. So when you tell a parent that their child has HFA, and still the child struggles with ADL, they feel like a failure. A more measured, "your child is able to speak and communicate his needs, but still will need intensive intervention to have a meaningful conversation with another person." is far more informative than a label of high functioning or low functioning.
Joseph Clark	1.The term Autism is being utilized as a broad brush. Most folks think that someone with Aspergers is Autistic. Subgroups need to be clearer.
Eric Common, University of Kansas	identification of subgroup
R.Walker	Gaps in research: each child is still seen as a part of a whole. I think it was a mistake to make one label, "autism", fit a profoundly complex and multifacted condition based solely on "behavior" which is a somewhat subjective label. Also, "behavior" totally negates medical/biological/genetic/educational/psychological complexities. Let's be realistic. Making autism "behavioral" does not make it needs based. My background is education...and another teacher made me aware that the label tells us nothing about a child's educational needs. Are they ID? Are they LD? Are they gifted? Each area is totally different in how the most important people next to family are going to begin. Do they have language/communication/AAC needs? What are the medical needs? Are they fragile or robust? Does epilepsy enter in? Dr. Dorothy Bishop suggested a rubric because of the multitude and profound coexisting conditions. A rubric would be lovely for each child. Begin there, and then start looking for biological differences based on medical/educational similarities. We just can't lump everyone together anymore.
Anonymous	Identification of ASD and subgroups: it would be helpful to know earlier in life. How can the medical community help with early diagnosis?
Paula Webster, West Virginia University	Identification of subgroups is critical to understanding all other aspects of autism. We do not group everyone that has a heart attack into one group assuming they all got to that event in one way, so it makes no sense that everyone with a dx anywhere on the autism spectrum (ASD, PDD-nos or Asperger's) are most often lumped together in studies as they have diverse stories regarding the development of their autism symptoms and correspondingly diverse phenotypes.
Anonymous	identification of subgroups
Anonymous	There needs to be more focus on "classic" autism. Divide the spectrum. WE need cures/treatments for children and adults with true autism. If people on the high end of the spectrum don't want to be "cured" why are we treating these disorders together. As the parent of a young adult who suffers terribly from this disorder, I want research and services which will help him and others like him. It is so diluted now, and the people with the most needs are suffering more.
Anonymous	Identification of subgroups so that treatment can be tailored to the individual.
Chris Lacey, Autism ALERT, Inc.	(a) SUBGROUPS--the "very low functioning have different needs: lifelong care, supervision, and assisted-living housing options. (b) POLICE need to be educated on autism so they don't mistake a person with autism as acting suspicious or being non-compliant or not following directions. (c) RESPITE CARE for parents of severely autistic children that can't work outside of the home due to the burden of care. RESPITE NEEDS TO BE PROVIDED so that parents can continue to be functional members of society, instead of unpaid caretakers unable to support themselves. (d) ASSISTED LIVING AND HOUSING. This country is not at all prepared for the upcoming influx of severely affected individuals with autism when their parents are no longer able to care for them. There's vastly insufficient assisted-living and housing options, especially for the most severely affected.
William Craig	My daughter is now 18 years old. She was not diagnosed with ASD until she was 6 years old. We thought she was developmentally delayed, and had no idea what ASD was, much less how to treat it. The only way we keep her under control is through medication prescribe by her Neurologist. My main problem is the huge disparity between ASD children. Some are fairly functional, and some like my daughter is on the severe side of the spectrum. It's not fair for her to be thrown in with higher functioning ASD children, because she is put in the corner and ignored.
Maranda, Houston Autism Resources & Support (HARS)	There is a growing separation between the "high-functioning" and low functioning diagnosis in terms of how high-functioning autistics view themselves in comparison to low functioning autistics. I wonder if there will be a time, in the near future, when a high-functioning (needing little support) diagnosis will be separate from the low functioning diagnoses. Adult autistics (self-advocates) are very vocal about wanting to be identified as a separate group that is as functional and as able as any neurotypical individual. And young high-functioning autistics are significantly frustrated when they are around low-functioning autistics who verbal stim.
Anonymous	Identification of subgroups
Julia Biagiarelli, Easterseals	identification of subgroups
Anonymous	I feel that there needs to be more consistency in the "definition" of autism and its subgroups. The autism spectrum is very broad, and it is my opinion that very few people (even those with the best intentions) really understand what is and is not autism.
Jilene Chivell Griffiths	Identification into sub-groups for more individual approach to treatment.
Anonymous	Having a single bucket of "autism" as a diagnosis is confusing, misleading, and raises red flags when I choose to reveal it. Years ago my kid received a PDD-NOS Dx, and I felt it was descriptive because she's not verbal enough to be Aspergers, and yet too verbal to be profound Autistic disorder (like my nephew). Perhaps ADHD with autistic traits is a better descriptor, yet it is clear she needs services and supports that those with Autism are able to receive. I saw a recent article implicating high levels of folic acid as a possible cause of Autism, and wonder about that. Clearly more research is still needed and research reports need to be widely available to the public. Public Service messages about autism, inclusion, and anti-bullying are still very important also.
Anonymous	A subset, perhaps large, of children with behavioral symptoms of "autism" suffer from immune dysfunction and true, physical illness. This subset can be treated and then benefit from therapies such as speech, special ed, etc to rehabilitate them. This nation would save significant money if these subsets could be identified early, treated and rehabilitated to become productive members of society, rather than recipients of lifetime care. If this subset is not true "autism" then we need another name for it to give these kids a future. Use the SBIR funding mechanism to support new and innovative technologies to identify at risk populations using immunologic, not genetic screening. From the work of Judy van de Water, we know that more than 1/5 of cases of "autism" are the result of autoantibodies directed at the fetus. We need much more effort at identifying subpopulations so they can be treated properly. While every child is unique, it is clear that major subgroups exist.
Julie Curry, son with autism, 21 yrs old	Every person or patient presents with different symptoms of autism---broad spectrum. It is such a puzzle. Seems to be conflict in diagnoses as well.
Anonymous	Identification of subgroups
Anonymous	I'd of subgroups
Anonymous	As the numbers of children diagnosed continue to rise sharply, better distinctions need to be made in terms of severity and associated responses.
Anonymous	identification of subgroups
Anonymous	Diagnosis and identification of subgroups should be the highest priorities in the early years. Our doctor totally missed it from birth to over eight years old. My sister's friend recognized the description of the symptoms and we had to bring it up to the doctor. Valuable time for interventions had passed at that point.
Brooke Potthast	As the mother of 4 children, I was very surprised to have my 4th child, a typically developing 21 month old, begin to lose skills, stop answering to his name and slowly lose the ability to speak. His clear, pure baby voice once easy to understand and with perfect intonation disappeared into apraxic, groping sounds that were unreliable and inconsistent. Having spent 12 years working with our son and others who lost speech it has become apparent that there is an egregious misdiagnosis going on in a large percentage of the children identified as having ASD. Our son and many individuals like him are not socially or cognitively disabled, as the diagnosis would lead you to believe but have severe sensory movement disturbances. These individuals have significant problems with praxis and body control, all of it made worse by damaged sensory systems. The most important thing the IACC could do (other than insist on a safer vaccine schedule) is suggest early diagnosis of the degree of movement disorder and address it with extensive sensory motor therapy focusing on praxis and body control Children in this subset of autism need to receive physical, occupational and motor therapy that will help them with the gap they have between intention and action. They should receive therapy that will target the skills that lead to pointing to letters to spell their thoughts rather than having to depend on unreliable and rote verbal expression.
Kristen Brown	Parent of two ASD sons
Lydia Schuck, PhD Parent of young adult with autism, community living services provider, education researcher	Identification of subcategories: Please increase research into the diagnosis and screening of youth with autism who are also blind or visually impaired.
Rebecca Singleton	More research into the identification of subgroups and the genetic component of ASD
Kristen and Brian Festa	We need to identify subgroups and how to treat various subgroups.
Faith, PLAN parents Boston Autism Program	Identification of subgroups
Anonymous	Research: research should focus on epigenetics-- how our genes can be changed due to environmental factors. Also focus on researching SNPS and supplements that treat SNPS. Services: behavioral services for all in every state, quality adult services that continues to teach using high quality approaches, Insurance needs to cover all approaches to improve health including supplements. There needs to be a non profit autism center in every state funded by the government but by ran by parents of kids with autism. Too many people are getting rich off of our kids with autism while parents are spending their retirement trying to treat their kids. Diagnosis: there should be levels of severity and more money and resources given to kids with more severe need.
Jennifer Keller	Id of subgroups
Anonymous	Identification of sub groups
Mark Justin Draycott, Parent of a person diagnosed	The terms "Autism" and "Autism Spectrum Disorder" cover such an enormous range of profiles that they are not useful and, in fact, may contribute to public and professional misunderstanding of the varied profiles that are mis-grouped under these broad terms. For example, some persons considered "on the spectrum" based on a diagnosis of Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) may have a neuro-motor problem that affects their speech - but may have no deficit with respect to empathy or understanding inflection and nuance which is often associated with the more typical public understanding of autism. Such persons, however, may be unable to communicate their perceptions and understanding.
Anonymous	We need better awareness in the community and among professionals of developmental regression in the second year of life in some children with ASD. We also need more research about the causes of regression.
John Rodakis, N of One: Autism Research Foundation	I believe we need more emphasis on sub-grouping, not just by severity but also by treatment-responsiveness. Many ASD children are responsive to diets, many are not. Rather than debate the universal efficacy of diets, I believe that this & other types of responsiveness could form the basis of an sub-group for further investigations. Fever & antibiotic responsiveness are other potential subgroups. I would like to see a greater distinction between mildly and those severely affected who are unlikely to be able to lead an independent life. With an emphasis for bx support and school & work modifications for the former and intensive medical research for the latter.
Russell Goodman	There are a number of children who will suffer problems which mask an effective diagnosis of autism, and higher-functioning children who adapt skills to "present well" will likely present as anxiety/PTSD cases, until the deeper traits are noticed. Diagnosing a child can be difficult as, for example, a child could be removed from their parental figures, and the resulting chaos is often suggested to be caused by the disruption to the childhood, while the autistic nature goes unnoticed. Learning to discover and embrace the child's niches as well as help them expand past their niches (linking new material to something familiar within their niches) may prove difficult, but may prove effective.
Maureen Durkin, University of Wisconsin-Madison	1. Accuracy of ASD diagnoses among individuals with intellectual, hearing, vision, motor and other disabilities.
Tammy G Harrison, Parent of ASD	co-occuring conditions. It would be nice to be able to identify the breakdown of what is happening and why and know what angle in which to approach.
Laura Baker, Dr.	Autism is so large a category as to tell you almost nothing about an individual child. We need more subtypes.
Gina Pepchinski	I am of the opinion that each person who receives a diagnosis of autism belongs to a subgroup with known or unknown conditions and probably any number of causes. My 26 year old son presents with autism, apraxia and seizures. He was most helped by sensory integration. I think we need more research into the possible subgroups. Being part of a spectrum really does nothing for my son. It took us several years after his initial diagnosis of autism to learn of the apraxia, yet working on that has helped him the most.
Susan Walton, Outdoor Autism & Special Issues School	Identification, description and responses to subtypes

Universal screening for ASD is needed

Respondent	Response
Cinda Walchli	Making sure that all infants have regular developmental screenings from birth throughout all well visits with pediatricians. If any indicators are present - then a referral for full evaluation should be conducted.
Lynn Decker	Failure of the U.S. Preventive Services Task Force (USPSTF) to recommend universal screening for Autism is a very troubling result that needs a response from the IACC. AAP, state EI agencies, and the consensus of the research and intervention professions is clear that universal screening, even with the less than ideal tools available, is the responsible posture to take.
Nina Boal	Make diagnosis services readily available to anyone who needs them.
David Radford	I have Asperger's Syndrome and was not diagnosed until an adult. I think there should be screening at the kindergarten and 1st grade levels to test and catch Autism early. We must develop a screening system in public education, regularly administered by qualified professionals.
Dean	Everyone with a newborn infant MUST be tested! They must be aware of the early signs and be ready to intervene as soon as Autism is confirmed! We must have fully socialized medicine so that poor families will have resources and knowledge on this.
Pamela Blankenship, Parent/Grandparent of children with ASD	Public school entities (e.g. Child Find offices) should be required to use screening tools specific to identifying children with ASD as early as possible. Many currently used tools (ASQ, ESI-R, etc) are not sensitive to picking up on the sensory-related issues that very young children on the spectrum experience. And, because it is in the financial interests of public schools to limit the number of children identified, there is a tendency to under-identify children, especially when the parent is resistant but the early childhood program staff have concerns.
Kristi Stockdale, Parent	Getting regular screening for autism into the routine Well Child Check appointment schedule should be as essential as immunizations. Currently there is no real "incentive" for physicians and providers to do so. Either making this a billable service as a separate CPT code, or having it as a requirement for entrance into daycare/school programs, or some other mandated requirement may be necessary to get screening nationally accepted as part of "normal" screening. Perhaps a study could be done looking at rates of screening with and without such incentives/requirements.
Alisha Gomes, Parent	When doing a check up at a certain age doctors should have part od that were they are looking for autistic like tendencies.
Heather Winterbottom	Medical providers and preschool/school educators should be mandated to pursue referral to agencies who screen for autism and other disabilities
Anonymous	Consistency is services across the nation. You should be able to go from one place to another and the services be the same
Anonymous	There is a growing need for universal screening as recommended by the AAP at 18 and 24 months. This can be folded into the larger picture of screenings for other developmental disabilities.

Current priorities are appropriate (diagnosis and screening tools, early signs, symptoms and biomarkers, identification of subgroups, disparities in diagnosis)

Respondent	Response
elaine nelson, young adult son with autism	diagnosis and screening
Kathi Tornabene	I think we have gotten much better at this.
Anonymous	The above topics are very important.
Geovana	Diagnoses and screening
MaryAnna Dunn	I do not see any of these as a higher priority than any other. I am mostly interested in prioritizing what improves the lives of people with autism and their caregivers.
Parvathi Gontina	diagnosis
Anonymous	Critical
Trish, special ed nurse and parent	all of the above are important, however not enough education is given to educators and the public at large about autism, because by the time a parent has had to intervene on the child's or adult's behalf, the damage has already been done; e.g., stress, low self esteem, etc. People are just plain ignorant about these disabilities, and autism isn't as obvious until it becomes a crisis situation. It took over 10 years for the dept of ed to catch up and it fell to us parents to teach and explain our kids, which was 10 years too late for my son, who could have been included in regular ed classes instead of being warehoused in the "special day class" ghetto. Again it's the same with finding him work! There needs to be more outreach to potential employers about the value of these folks in the workplace.

Multiple Themes Addressed

Respondent	Response
A Kimbrell	1) Early diagnosis and further research into child's development and history by physicians (pediatricians as well as family doctors). To often children are not diagnosed until age 4 or later, which is too late for early intervention. 2) More federal funding available for genetic screening tools. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; More and increased access to genetic screening
Aimee Combs	Early diagnosis and intervention is a priority. I've never really been interested in what caused my son's autism, only wanted to know how to treat it. Parents will help for their child NOW. Research seems overly focused on the cause when that money could be better spent being passed on to families to fund evidence based practices to treat their kids. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; More and increased access to genetic screening; Improve the link between initial diagnosis and access to services and interventions
Paula Roegge	Early diagnosis in girls. Especially with Asperger's, girls tend to adapt better, and may not be as obviously autistic. yet because of the nature of girls in society, it is harder for them to fit in socially. Girls bully in more subtle ways, and adults may not realize it is even taking place. Late speech is often given as a symptom, but early and advanced speech may actually be a symptom of Asperger's, especially with girls. Also - those of us who have children with Asperger's really want the distinction and terminology back. We continue to use it despite the change in the DSM-V. There is a great deal of difference between Asperger's and autism and that should be recognized. Themes Addressed: Better recognition and diagnosis of subgroups; Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis
Dena Gassner, Arc US/ ASA	Specific research using female subjects about issues affecting autistic girls/women; identification and referral, diagnosis, treatment, addressing of co-occurring depression/anxiety/eating disorders/non-suicidal self-injurious behavior/ suicidal ideation/ disparities and gaps in accessing healthcare; maternal wellness support; addressing abuse and domestic assault. 3. Misdiagnosis and ensuing maltreatment Themes Addressed: Access and improvements to reduce the time to diagnosis; Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis
Christy Chapman	Symptoms of Autism are often missed until it is too late for early intervention/critical developmental period. Parents and especially physicians need to be more informed about catching symptoms early. In addition, it is easy to forget that there are comorbidities with Autism, so you can't just say an individual has Autism and that explains everything. Often anxiety, depression, ADHD, and other disorders can also be present. As part of my PhD studies, I have actually developed a screening instrument fir practitioners specifically to assess anxiety in individuals with Autism because I have seen this as being an issue while working as a Licensed Specialist in School Psychology in a public school district. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; Improvements in the accuracy and usability of screening and diagnosis tools
Charles Cowan, Seattle Children's Hospital Autism Center	Screening/diagnostic tools are inadequate due to necessity of using highly trained personnel administering such instruments as ADOS or other complex diagnostic aids. Simpler tools need to be developed using video, internet resources, crowd sourcing, big data analysis, and other methods that can be scaled to meet the population of ASD children not being diagnosed early. Additionally need to develop techniques/instruments to reach out to minority/non-English speaking communities. ASD should be able to be accurately diagnosed to a greater extent by primary care physicians with adequate distant support using telemedicine or other technologies. Themes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Connie Zienkewicz, Families Together, Inc.	Primary Care Physicians and Pediatricians should be screening for autism at EVERY well-child visit. Parents should be aware of what is being accessed so that their awareness can be enhanced and they can be good partners with health care providers if there are suspicions of autism or ANY other diagnosis. Themes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Universal screening for ASD is needed
Danielle Oakes	early warning signs, disparities in diagnosis, identification of subgroups Themes Addressed: Better recognition and diagnosis of subgroups; Better understanding of early signs and symptoms; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Anonymous	I would consider identification of subgroups and disparities in diagnosis important research topics. Themes Addressed: Better recognition and diagnosis of subgroups; Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis
Ellen Maurer	Autism Spectrum Disorder is a neurodevelopmental disorder with many deficits. The cause is unknown, early signs are, not looking people in the eye when speaking with them, being nonverbal, lack of social skills, the child may experience what appears to be anger when a schedule changes, be easily frustrated and many other heightened emotions or the child may appear to be completely apathetic. These are the main behaviors looked for in diagnosis. Some are taught as a form of respect in other cultures. Cultural awareness should be a part of the process of diagnosis. Asperger's syndrome is the opposite and should not be classified as autism. There are no bio markers for this disorder and many doctors do not believe that there is a problem when parents see one. Children with autism may not meet the milestones as other children do, my son did not walk until he was 3, did not like to be held or cuddled, was fascinated with the parts of a cootie bug. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Anonymous	The most important priority is identification of subgroups so a focus on treatment can be established. the biomarkers are also equally important but with out the research this will never move forward. Themes Addressed: Better recognition and diagnosis of subgroups; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Anonymous	Diagnosis and screening tools. Physicians listening to the concerns that parents have, not dismissing them. Also, physicians conveying their concerns and not being hesitant to express concerns about development. If screening tools are "normalized" in the well baby check and done well, children can be identified early. Early intervention is critical to improving the life of the individual with autism. Themes Addressed: Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	My experience during diagnosis for my son was that I had a list of complaints but would see different providers (even within our own primary care practice) and no one ever connected the dots. There seemed to be a fear of making the leap from what could be considered "developmentally age appropriate" to "that may NOT be developmentally age appropriate". I realize initially signs and symptoms may be incredibly tough to interpret, but there should be a consideration on what the parent is telling the provider...my son was my third child, I knew something was wrong but couldn't put it into words, and I kept getting shuffled around. Finally, when we were pointed to autism, it took 6 months for him to be seen. Precious, precious time in early development, when insurance won't cover needed services until there is an autism diagnosis. Themes Addressed: Access and improvements to reduce the time to diagnosis; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Vince	Identification of subgroups/Disparities in diagnosis - one size does not fit all, and this will help guide treatment options Biomarkers - which children/parents are most susceptible. Themes Addressed: Better recognition and diagnosis of subgroups; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
R. Paleau	My daughter was only diagnosed with ASD as a teenager, but this shouldn't have been the case, as she was receiving special services from 9 months old from multiple specialists and programs. At the time she received the diagnosis I asked the doctor what I could do for her, she said "nothing, it's too late." Screening needs to be standardized and in place for every student with an IEP - school psychologists and social workers and guidance counselors should all be aware of what to look for, and referrals for full evaluations should be in place in all service centers and schools Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; Improve the link between initial diagnosis and access to services and interventions
Leslie Pirelli	Early screening and intervention available to parents to provide skills and therapies necessary to provide the child with autism a chance to have a life as close to normal that is within them. Early signs are not available to parents which is so important for appropriate interventions. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; Improve the link between initial diagnosis and access to services and interventions
Anonymous	Early signs and symptoms. Pediatricians need to be more aware of what they are looking for. Parent advocacy also needs to be promoted. If a parent is feeling something, usually they are right. Themes Addressed: Better understanding of early signs and symptoms; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Julie Johnson Coulter, CoulterWorks	We went through the diagnosis roller coaster, hearing about 6 different labels from different professionals, beginning in 1988, when our son was 4 1/2 years old. I hope the situation is better now. I hope that pediatricians are more up to date and better at screening. Themes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Julie, Mother of 4 year old newly-diagnosed with autism	We found that the M-Chat did not help us to identify issues with our daughter at an earlier time because it doesn't give a baseline for comparison, especially important for first time parents with no other experiences from which to draw. For example, our daughter made some eye contact and did some pointing, but it's only years later that we realize that it wasn't maybe as much as other children. We haven't found the current explanation of severity in the DSM (as explained by the developmental pediatrician) to be helpful in terms of understanding the depth of challenges facing our daughter when considering any mitigating strengths. As it was explained to us, the discussion of severity now revolves around the level of support required to be "successful." A child is automatically marked as severe if their joint attention is very low, because they will need constant support in school in order to succeed. However, in life, strengths such as a degree of flexibility and adaptability as well as a measured cognitive ability (completely absent from the discussion) were not reflected in our discussion of the DSM. For this reason, we felt the diagnosis process was very overwhelming and confusing and didn't provide us a strong foundation regarding where to go next in terms of seeking assistance. Themes Addressed: Families need support following diagnosis to both emotionally and in navigating initial access to services; Improvements in the accuracy and usability of screening and diagnosis tools
Julie Long, parent of child on spectrum	Early signs and screening tools have come a long way in recent years. Future priorities should be biomarkers, ID of subgroups, and lastly disparities in diagnosis. Themes Addressed: Better recognition and diagnosis of subgroups; Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Karen Delaney	It was very stressful to wait nearly 11 months from point of contact with the agency that could provide an official diagnosis to the actual first appointment. This is a long time in a toddler's life and a lot of missed time in services that could have made a bigger impact if started earlier. Also a clear gap in the training and skills of general practitioners and pediatricians....our family practitioner made some questionable suggestions early on in our son's life indicating his experience and knowledge was limited. Diagnosing subgroups: not sure what this is looking for but one agency diagnosed my son as PDD-NOS (16 years ago) and nearly 6 months later another professional just shook their head and said "no this is classic autism" Themes Addressed: Access and improvements to reduce the time to diagnosis; Improvements in the accuracy and usability of screening and diagnosis tools; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Karen Sanchez	Lack of doctors specializing in autism or even familiar with any aspects of autism. Lack of easy to find resources and understanding for parents and caregivers. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; Improve the link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Kimberly Richards, Parent caregiver	Lack of doctors specializing in autism or even familiar with any aspects of autism. Lack of easy to find resources and understanding for parents and caregivers. Themes Addressed: Families need support following diagnosis to both emotionally and in navigating initial access to services; Improvements in the accuracy and usability of screening and diagnosis tools; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Kathy Wilcox, ACCES-VR	Early screening and identification of infants and toddlers who display signs of ASD is critical. Research has shown that Early Intervention beginning as young as possible can make huge differences in the child's outcome and potential throughout their entire life. I believe it is also important to distinguish between children who display more of the signs of "classical autism" and those who would previously have been labeled "Asperger's" as these children have very different needs. Continuing to identify genetic and environmental causes of ASD should be on the forefront of research. Themes Addressed: Better recognition and diagnosis of subgroups; Comments supporting greater or lesser early screening and diagnosis of ASD in children
Katrina Ostmeyer-Kountzman, Integrated Behavioral Technologies, Inc.	1. Several physicians in rural (and even not so rural areas) are unable to recognize the signs of developmental delay, especially in higher functioning children. 2. Several physicians are still taking a "wait and see" approach. There needs to be more education in this area! We've seen this even with strong recommendations for further assessment from childcare providers. 3. Waiting lists for diagnosis and assessment are very long (6-12 months in our area). 4. There appears to be a lack of knowledge of appropriate screening tools for youth over the age of 6 who are presenting with developmental delays in physician’s offices. 5. Children in rural and low-income areas are less likely to get a diagnosis and are diagnosed are later ages than their urban, higher-income counterparts. Themes Addressed: Access and improvements to reduce the time to diagnosis; Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Karen McHale	Finding decent therapists to evaluate and diagnose autism is exceedingly difficult. Most parents have to rely on their doctors in their medical groups assigned by their insurance companies, many of whom do not have a great deal of training in autism. Most parents are very confused and do not understand how to get through the murky waters that is autism. We need better services for ASD children and their families to get them identified, evaluated and treated early. In California, we have Regional Center. We need to get more children through Regional Center for evaluations and to get them services as soon as possible. We also need more preschools through the public schools for special needs kids. My son went to one in our district and it was extremely helpful. Getting ASD kids into these programs is also very important. We also need to get children who are low income identified and into the system as soon as possible. These children lack services at a much greater rate than middle to upper class children. Research also needs to focus less on "cures" and more on helping people with autism to function in a neurotypical world. Children who obtain services early typically do much better. Themes Addressed: Improve the link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
kathleen dugan, parent of twins with autism	There are huge disparities in diagnosing. Professionals are "not on the same page" with diagnosing Themes Addressed: Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Clarissa Kripke, MD, University of California, San Francisco	Racial and gender disparities in diagnosis. Does population based screening improve outcomes? Themes Addressed: Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Krishna Murphy	1) Diagnosis/screening tools - should be UBIQUITOUS! 2) Early signs, such as cranial nerve dysfunction affecting eye muscles - should part of a REQUIRED STANDARD post-vaccination screening after every vaccine. 3) Identification (by biomarkers and family history) of those most at risk PRIOR go injection! Themes Addressed: Better understanding of early signs and symptoms; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Universal screening for ASD is needed
Anonymous	Identification and differential treatment options for subgroups early intervention prior to diagnosis social emotional interventions family support services; i.e. counseling, respite Themes Addressed: Better recognition and diagnosis of subgroups; Families need support following diagnosis to both emotionally and in navigating initial access to services; Improve the link between initial diagnosis and access to services and interventions
Anonymous	1. Mandatory screening if a 2 year old is showing delays of at least 1 year. 2. Providing Regional Centers with larger funded budgets to aid in Autism assistance. A friend hasn't received a callback in 90 days - her son is 3 1/2 years old. 3. Creating more programs for HFA teenagers and young adults. Themes Addressed: Access and improvements to reduce the time to diagnosis; Universal screening for ASD is needed
brandon miller, autistic adult	Identification of subgroups, disparities in diagnosis, treatment, support, and late diagnosis tools for adults Themes Addressed: Better recognition and diagnosis of subgroups; Improve accuracy and awareness of diagnosis in females/address sex and gender disparities in diagnosis; Need improvements in access and accuracy of adult and adolescent diagnosis
Patty Jo, School System, Ga.	I have concerns that families are often late in receiving a diagnosis. I understand that doctors are hesitant to label A little one with the diagnosis of autism, however, families need support early on and can qualify for a number of services once they would receive Such a diagnosis when it is evident to all involved. All one has to do is go on the Internet to find typical symptoms. Although efforts have certainly improved over the last few years, I see a continued lapse in the physicians' role in sharing with families their thoughts. Even if they might be merely considering the diagnosis of autism, I think it's wise to inform parents of the red flags that they may note. That way parents could begun to do research on what might be an inevitable diagnosis. In addition, I think it would be smart to have local experts in the field do ongoing education to childcare providers, Headstart centers, etc. on red flags as to what to look for and then how to approach parents with their concerns. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Although difficult to achieve, there needs to be a standard method nationwide to screen for potential ASD diagnosis during pediatrician visits through the use of tools like the ASQ, etc. Early intervention services need additional funding as there are often long wait lists while families standby and worry. Additionally, more genetic research is needed so that common types of "autisms" (related to different sections of the brain) can be identified and detected in order to study subgroups in the hope more pinpointed treatments and strategies can be developed. Themes Addressed: Better recognition and diagnosis of subgroups; Improve the link between initial diagnosis and access to services and interventions; Universal screening for ASD is needed
Resa Warner, Parent of 15 year old autistic son	When my son was diagnosed (30 months old) I was told autism was most likely genetic because his fraternal twin is not affected. I have waited 13 years - still no explanation. Genetics can only explain a small minority of cases. Why wasn't the search for biomarkers started sooner? Why does the ADOS have a royalty fee for its use? Themes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Shannon D'Aquila, parent	Education of pediatricians. Just as there is a data base for vaccines in Louisiana, there should also be a database that is connecting pediatricians and child care providers/schools indicating that a child has been appropriately screened in accordance with the developmental age markers already put in place. Parent education on the signs as to what to look for and perhaps an online pre-screening. WIC offices, welfare offices and food stamp offices, and SSI service representatives can also be trained to help identify possible at risk children and refer them to early steps etc. Themes Addressed: Families need support following diagnosis to both emotionally and in navigating initial access to services; Parents and caregivers need greater education so that they can recognize signs and symptoms,
Anonymous	Research on biomarkers and genetic factors is important so treatments can be developed accordingly. There seems to be many different forms of Autism, therefore Identification of subgroups is imperative. Themes Addressed: Better recognition and diagnosis of subgroups; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Michelle Wolfson	Identification of subgroups Early signs, symptoms, and biomarkers Themes Addressed: Better understanding of early signs and symptoms; Better recognition and diagnosis of subgroups; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Anonymous	Need to "find a way" to require all FP and Pediatricians to be part of their protocol to ask the right questions at the 8 month, 12th month and listen to the parents concerns. Being able to bill for a longer appointment would help. Themes Addressed: Comments supporting greater or lesser early screening and diagnosis of ASD in children; Universal screening for ASD is needed
Anonymous	Early behavioral signs Identification of Subgroups Diagnosis Disparities Themes Addressed: Better recognition and diagnosis of subgroups; Better understanding of early signs and symptoms; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Alexandra Valentine	Lack of professionals who understand autism in the diagnostic stage to the adult service age. There are too long of waiting list for the young child with autism to get early intervention and therapies they may need especially speech and language. Also parent support so that information can get to the families.Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Need to strengthen link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Alanna	Under diagnosis & misdiagnosis in females. Services are non-existent for adults, diagnosis is not even considered past adolescence. When should I be concerned? Um never. Autism is not something to be concerned about, it's something to celebrate!Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need improvements in access and accuracy of adult and adolescent diagnosis
allison velarde	I believe primary care doctors should be educated on the early signs of autism and related disorders. A wait and see approach is delaying impactful services. There should be a national protocol for measureing developmental benchmarks to alert a family/doctor to any deivation from a normal trajectory Research to identify the genetic mutations is imparative if we are to develop more effective treatments A biomedical protocol should also be covered by medical insuranace. We have large expenditures monthly for supplements and vitamins that are not a typical OTC variety. Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Universal screening for ASD is needed; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Alice Ospovat	Our priority should be on early screening and diagnosis of kids on the autism spectrum, and education of parents and professionals about the fact that autism is a disorder (likely genetic) that cannot be "cured," but that there are many assistive treatments and technologies that can improve the lives of autistic kids. Policies should focus on acceptance of children's differences and encouragement of their unique abilities, in addition to offering services for those who need them.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Parents and caregivers need greater education so that they can recognize signs and symptoms
Anonymous	Clearly much sooner than they are. My 10th grade girl was just diagnosed with HFA, but has had a diagnosis of ADHD: Inattentive since 3rd grade. She scores in the mid to high 120s on almost every test except math. Rather than simply checking this off as "acceptable," these scores ought to be an indicator for further examination. Such testing would have helped me identify what is in hindsight my own issue with HFA. Having this diagnosis earlier would have helped the school system with providing her and us (her parents) more support than a 504 plan and lax follow-up. I actually don't have an answer, because until we got the diagnosis, support was limited to extended time for testing, and other fairly passive responses to my daughter's issues in school. Furthermore, her father's response (punishment for work not accomplished) has served to damage my daughter's ability to function in a useful way. Services are few and far between in Maryland, if a child isn't recognized as on the spectrum. ADHD may be an indicator of more than just daydreaming. When a child receives a diagnosis, a parent may seek out all sorts of solutions that lead to quackery and result in the provider taking advantage of the parents' desire to do what's best for the child. This "epidemic" of children on the spectrum isn't a surprise. Highly intelligent people are drawn to each other. Given that this is the case, it's not a shock to see more kids developing these delays and other issues. If the school is the source of identification, or the parent has to pay exorbitant fees to determine the truth, how does this help? Testing services and screenings for hearing and eyesight are often given by elementary schools early on. The same sort of screening for Autism signs could catch HFA far earlier.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Universal screening for ASD is needed
Harriet Austin	Earlier diagnosis is critical for beginning therapies that may be able to improve the child's outcome. In addition, knowing one's child has this diagnosis changes how one parents, which can provide therapeutic benefit as well. Ideally, the diagnosis would be based on unequivocal biological markers rather than behavioral testing. Once diagnosis is made, access to behavioral interventions without delays is also critical. Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions
Stacy	When my son was non-verbal at age 3, his Dr. Dismissed my concerns about autism and we didn't get a diagnosis until he was 11. Schools should have better testing strategies. My son was bullied to the point of ending up in a hospital day program for 8 days because their testing didn't show any problems and it was two months before we could get testing done to find out he has asdThemes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Anonymous	Priorities should include defining what to look for (early signs) so individuals and families can take part in the various early childhood programs available. Disparities in diagnosis should be carefully considered as a number of individuals are misdiagnosed early on and therefore do not receive proper intervention or miss intervention services altogether. Themes Addressed: Better understanding of early signs and symptoms; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Christy Moore, Parent	I have a 5 yo daughter who was diagnosed in Feb. 2016. I had been trying for 2 years prior to get her evaluated for autism. She kept scoring "too high" on the social components of the screening tools. When she was finally evaluated at TEACCH at UNC they said that girls on the spectrum are often overlooked because screening tools were developed on data from males and low functioning girls, so higher functioning girls who have learned to mimic appropriate social behavior, pretend play, etc., are often overlooked. Evaluators have to have a real keen eye to spot atypical components of the mimicked social behaviors. I believe their cannot be "one size fits all" screening tools for all children who have established developmental concerns and need to be evaluated for autism. Girls often present differently than boys. Many girls are missed and treatment starts late as a result. Additionally, no one every recommended genetic testing until I happen to run into someone who is a genetic counselor. Turns out my daughter also had a deletion on her 8th chromosome, and has genes deleted that are believed to be associated with ASD. I wish someone I had been working with (therapist, Neurologist, psychologist, developmental ped., regular ped., care coordinator) had recommended genetic testing when I first noticed substantial developmental delays at 9 months. 1. Gender differences and gender appropriate screening toolsThemes Addressed: Improve accuracy and awareness of diagnosis of females; Improvements in the accuracy and usability of screening and diagnosis tools; Need more and increased access to genetic screening
Carla Meads	I believe that understanding the biomarkers and what the early signs are, first and foremost important. It needs to be easily available to everyone.Themes Addressed: Better understanding of early signs and symptoms; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Allie	Early diagnosis (pediatricians taking the wait and see approach), difficulties in recognizing autism in different cultures, and services for individuals with dual diagnosis (autism and mental health disorders)Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Need to increase/decrease early screening and diagnosis of ASD in children
Anonymous	There is no standard, universal screening tool. I took my kids to two different neurologists, a psychiatrist and a developmental pediatric physician to get my twins diagnosed. Each provider used different questionnaires and skills testing to determine my children's diagnosis. Then it took weeks to get a diagnosis letter. That delay caused my children to miss the boat on some therapies and even parent training. Insurance companies also need to be covering these assessments at 100%. 3. Not enough providers in the mental health industry to help families get the diagnosis they need.Themes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	The diagnosis of autism seems to be a very long process. It takes several referrals and a lot of traveling to obtain a diagnosis. Once one has the diagnosis then it is a challenge to find the appropriate treatment team, ABA therapist, and a provider (pcp) who understands autism. I noticed signs of autism at 18 months, my son was not diagnosed until almost 3 years old!! Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Need to strengthen link between initial diagnosis and access to services and interventions
Cyndy Langat, Kenya Autism Alliance	Hello. I believe proper training is needed for all practicing physicians so that they can better detect Autism at a tender age. Screening and diagnosis goes a long way. Sometime parents are misinformed. They find out later that had they had better information from their pediatrician, they would've put more effort on early intervention. Themes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
J. Berryhill, Autism spouse and Parent	Pediatricians are too often taking a wait-and-see approach, particularly with females, and they are not familiar with various treatment/ support options. The waiting lists for diagnostic visits to various autism centers is often 6 months or more. Too long! Also, the pronounced emphasis ABA as the only treatment option cannot continue. ABA does nothing to target the actual deficits of autism and completely undermines the culture of assumed competence the autism community needs for acceptance.Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Universal early screening by 18 months of age. Referral for community services. Insurance company assigning a nurse case manager when diagnosis has been reported. Case manager should contact family to coordinate all services covered under insurance and also inform family what services are covered.Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Universal screening for ASD is needed
Anonymous	As it stands screenings happen at infant and early childhood pediatricians, daycares, and schools. And I hear a good deal goes on in my area for adults. But we don't see much for the middle-school ages as far as diagnosing. If you're lucky enough (or foolish enough)to make it that far, there are few people in your community willing to tell you that your ten year old, or your twelve year old, needs to be screened and diagnosed. My son lost his IEP at age 8, and at 9 now, I am struggling to get them to reopen anything, despite him having multiple diagnosis, including his ASD diagnosis. If I, knowing what we need as far as OT, PT, ST, etc for my son, am struggling, I believe there needs to be more offered to a community in terms of services for, say, ages 8-14. A parent who isn't familiar with diagnosing, screening, etc, will have waited this long and said their kid was "quirky" at best, and now will be needing help and support. There is little out there in terms of this help and support. Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Need improvements in access and accuracy of adult and adolescent diagnosis
Debra Schafer, Education Navigation, LLC	If the "I" is a parent, concerns are valid when your "gut" tells you that something may be wrong. Far too often, parents go to their pediatricians and they are told to wait. This waiting process delays services and we know that early intervention is key to achieving progress. Additionally, many pediatricians lack the knowledge about autism spectrum disorders to appropriately provide an initial assessment or to refer the parents to a clinician capable of providing a comprehensive assessment and diagnosis. Another issue is the wait time for parents to see a reputable clinician. Parents can wait months if not a year or longer to secure an appointment with a clinician, again delaying a diagnosis and the start of interventions.Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Big C's Mom	The cost for diagnostic testing is very expensive, even with private insurance. The diagnosis of Autism is very vast, so the decision to discontinue with Aspergers, what is the difference between high functioning Autism and Aspergers. Themes Addressed: Better recognition and diagnosis of subgroups; Improvements in the accuracy and usability of screening and diagnosis tools
Anonymous	Disparities are the most important thing to look at: diagnostic disparities based on race/ethnicity, gender, immigration status, income level. Instead of framing later diagnosis as a problem, focus on social and political issues that lead marginalized groups to not get diagnosed. Gender is not "male/female" but should include how the person identifies.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Erika	Many insurance companies do not cover screening and diagnosis for autism, or co-morbid conditions like Topographical Agnosia or Prosopagnosia. Since many autistic individuals are unemployed, this makes a diagnosis very difficult to get.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Need to increase/decrease early screening and diagnosis of ASD in children
Erika Schron	Pediatricians should be cognizant of developmental milestones and delays, they should be more willing to listen to a parent's concerns and proceeding forward with developmental testing as soon as possible when delays or other signs are occurring that may be symptoms of ASD or other neuro-developmental delay. Doctors also need to be aware of the medical aspects of ASD, the stomach issues, the sensory issues and look beyond just traits to get to the root of the problem as early as possible. There also needs to be diagnostic measures for males and females that relate to each gender, right now the diagnostics traits fit the male profile for ASD rather than female traits.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Lindsey Craven	Biggest gap is early DX and intervention as well as having the supports. SPECT scanning should be considered as a standard in testing as this was a major key test in best result/outcome for usThemes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to increase/decrease early screening and diagnosis of ASD in children
Gillian Stein	I think there is a lot more information out on the early signs of autism. New parents seem to wait until 18-24 months hoping their child doesn't have autism. Pediatrician's appear to be aware of early screening tools. However there is a strong belief out there with "early intervention your child will be nearly unaffected." That isn't the case for everyone and sets up parents for guilt and shame if their child doesn't respond to therapy. I am also concerned about people who have a mixed diagnostic profile (including autism) and especially when behaviors are violent and affecting the whole family. What is being done to help these kids and their families?Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Need to increase/decrease early screening and diagnosis of ASD in children
Anonymous	1) School districts need more funding dedicated to training of personnel involved in autism identification / special education classification under autism and materials needed for that assessment 2) A big gap in research is female vs. male phenotype of autism; are we missing girls who are moderate / high functioning because they present with different symptoms than boys? . Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Grace Gengoux, Stanford University	Earliest signs and bio markers Themes Addressed: Better understanding of early signs and symptoms; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Anonymous, Downstate U. Hospital Brooklyn	Concern is that when parents bring concern to Primary Pediatrician, the Pediatrician does not use the free valid test m-Chat frequently enough and parents must wait 3 to 6 months for specialist. Clinically there needs to be correlation between psychological identification of autism which often is very much based on the GARS or CARS in my observation in our state and the DSM5Themes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Heather Baylies-Grigoreas	early signs starting early intervention services asap getting actual appointments to be screened that aren't wait lists of up to a year to be initially seenThemes Addressed: Better understanding of early signs and symptoms; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Need to strengthen link between initial diagnosis and access to services and interventions
Howard Habler	Early signs, symptoms and biomarkers msut be clearly delineated, if possible.Themes Addressed: Better understanding of early signs and symptoms; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Jacqueline M Ward	Diagnosis screening tools and early signsThemes Addressed: Better understanding of early signs and symptoms; Improvements in the accuracy and usability of screening and diagnosis tools
Jen	I think it should be a little easier to get ASD screening. In our case, our pediatrician suspected autism, then referred me out to a university, which had a 6 month wait and also costs $100 per hour. Also, I think a good percentage of pediatricians should get training in diagnosing and/or recognizing sensory disorders.Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Jill Longenecker	I think that diagnosis and screening tools have greatly improved over the last 10 years. The problem is getting the information out to preschools, doctors, and the general community. This still needs great attention. However, the biggest problem now is identifying subgroups. I think it would really help in the approach to treatment and expectations for all those involved.Themes Addressed: Better recognition and diagnosis of subgroups; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Following diagnosis, there seems to be a great deal of difficulty in finding qualified service providers who are close to home or work. Some drive MANY miles daily between ABA and school. I wonder if there is a way to test in-utero, without harming the fetus, so that if autism is present, therapy can begin forthwith.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to strengthen link between initial diagnosis and access to services and interventions
Ken	It is very difficult to find anyone for adult diagnosis. This is a huge gap, I know people 57 years old that should have been diagnosed correctly 54 years ago. There should be psychologist in every county that can diagnose inexpensively so people can find help. This is being ignored. One gap in services is that psychiatrist are taking the opportunity to ignore autism patients so they can identify them as suffering from a symptom and profit from selling drugs to them. It's unethical and wrong. Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Dwayne Kitis, Parent of Child on Autism Spectrum	Gaps include: healthcare and educational professionals advising parents that a child will grow out of certain deficiencies in meeting developmental milestones. If the milestones are not met the child should be screened for any issues that may cause a delay. Not all children grow out of educational deficiencies and the response should be what can we do to help the decrease the deficiencies and screen for the cause. The answer should not be the child will grow out of it and advise parents to continue on without interventions or understanding of the underlying cause. Advice to Healthcare and Educational professionals should be when a parent is concerned about there children's abilities and not meeting milestones that is when information flow about Autism and screening should begin. An informational handout regarding significant signs and symptoms should be given to new and/or expectant parents.Themes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Bio markers and disparities in diagnosis.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
kathleen Madigan, NBCT ECGEN 2nd grade teacher, grandmother of an autistic boy	Outreach to families and schools. Perhaps Early Childhood Programs could be the conduit to the many layers of other services instead of each group being a new hurdle for the family. These families are stretched thin already, having to keep reaching out to new waiting lists and paperwork is daunting. Schools need help to update their services.Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Parents and caregivers need greater education so that they can recognize signs and symptoms
Korri Ward, Northern Nevada Autism Network	Pediatricians (or medical provider) fail to educate parents about the critical importance of early diagnosis and treatment. Pediatricians fail to offer early screenings. Pediatricians are not reliably referring children for a diagnostic evaluation. Pediatricians are not referring children with autism for ABA. EIS in Nevada has a high rate of parents declining an autism screening. Public stigma and parent denial of autism cause delays in diagnosis. Are nursing schools teaching nursing students how and when to screen children?Themes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Women and girls don't receive necessary screening. Since females present differently than males, females often fall through the cracks and are misdiagnosed. This results in inappropriate and possibly damaging psychiatric and / or medical treatment. This issue also holds true for the mature adult, 30+ years old. Support and services for the population of 30+ adults are grossly lacking. The military and veteran subgroups also are not receiving screening and diagnosis-this demographic is for the 30+ years old adults. Many adults, 30+, have learned to "pass as a neurotypical" yet aren't able to effectively function, cope or are unemployed or under employed in the NT world. Many 30+ self-diagnose but have no where to go or to turn too. More research needs to focus on females, how they present and the difficulties they have in receiving a diagnosis. Far too many clinicians aren't trained in recognizing ASD in females and especially in the 30+ age range.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need improvements in access and accuracy of adult and adolescent diagnosis
Kristi Layman, Parent	I know that autism is a dsm diagnosis and the manual gives some guidance on diagnosing but I think there are professionals that are not completing accurate assessing and potentially misdiagnosing clients. I feel There should be a universal assessment criteria for diagnosing autism. I also think the completing the 20 questions from the MCHAT at 18 months and 2 year well child checks should be nation wide. I believe the earlier the better on diagnosing. Themes Addressed: Universal screening for ASD is needed; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Laurie	The family should start being concerned as soon as a child turns one year old. The MCHAT is not the best tool available but it at least assists the family with a growing understanding of what to look for. Early interventions is a great resource when you're able to get it. There has been so many children with needs, sometimes the services are delayed.Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Parents and caregivers need greater education so that they can recognize signs and symptoms
Lisa Geng, Cherab Foundation	As soon as a parent is worried they should seek an evaluation. If the pediatrician doesn't refer the child to Early Intervention the parent needs to be aware they can contact Early Intervention themselves. There are guidelines which show areas of concern by age such as what I have up on the Cherab Foundation here http://www.cherabfoundation.org/2011/late-talker-handout/ Many children with autism have apraxia, a motor planning impairment which presents today as another multifaceted neurologically based communication impairment. Apraxia can also be misdiagnosed as autism. For diagnosis children I recommend evaluations by an SLP, OT, pediatric neurologist or developmental pediatrician to confirm an autism diagnosis. I do not recommend psychological exams for the majority of preschool children as I've seen too many misdiagnosis of both autism and ADHD. You need a professional that can tell the difference between autism and apraxia. ABA which is a therapy used to treat autism is highly inappropriate to address a motor planning impairment and it can be detrimental. If a child has both apraxia and autism there can be a modified ABA which doesn't address the motor planning. If there is no progress in 3 months one should reevaluate therapy, therapist, and or diagnosis. Themes Addressed: Better recognition and diagnosis of subgroups; Practitioners need to listen to and consider parent concerns about early signs and symptoms
LorRainne Jones, Kid Pro Therapy Services Inc	Early signs are often missed. I am a speech language pathologist. We are often the "first responders" for children who eventually diagnosed with autism as they are often diagnosed first with expressive language delay. Need more training to recognize ASD symptoms Themes Addressed: Better understanding of early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Kathy	My son is 18 so it's been a while since I've dealt with this, but I have a niece who may or may not have autism, and she needs an evaluation from someone highly knowledgeable in various conditions. I think all pediatrician's offices need to screen for autism and they need to have a brochure or list of resources for parents.Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Improvements in the accuracy and usability of screening and diagnosis tools; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Leroy, Ph.D Candidate	I consider "early referral" based on Autism Spectrum Disorder specific education. Without knowledge of young children possessing autistic characteristics, then practitioners are often reluctant in making early referrals and thus preventing early diagnosis and early interventions. Currently, I am working on my dissertation and I may be a bit bias, but my topic focuses on factors influencing Pediatricians' decisions to refer children suspected of possessing autistic characteristics for further evaluation before 24 months of age. Looking at demographic factors to include ASD-specific education is real life situation that enough research cannot be committed to erasing the gap between early referral and diagnosis.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Faith McGinnis, parent	The biggest issue is having medical professionals recognize that parents know when something is not right. I have two autistic boys and to get my second son a definitive diagnosis was ridiculously hard. If you go to the dr. and say my son is 2 1/2 and is not even babbling, that is a sign something is off and should be tested. Research needs to be done on the genetic mutation and component as in my family there is definitely a link between the two. Should there be research to ultimately classify several different types and diagnosis for severity in separate classifications. A good screening tool would be at the well visit have drs. be well trained and have it be part of the checklist. We need to be more in depth on the sub levels of Autism. Themes Addressed: Better recognition and diagnosis of subgroups; Need more and increased access to genetic screening; Practitioners need to listen to and consider parent concerns about early signs and symptoms; Universal screening for ASD is needed
Anonymous	Autism Speaks has an extremely negative attitude about the autism diagnosis. I heard that someone at the Indianapolis walk was told that the "window was closing" and if he didn't act now, he would "lose his child forever". The emphasis should be on early diagnosis and early intervention. The attitude of your organization is truly hurting the autism community, particularly those adults living with high functioning autism.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions
Anonymous	Early detection for high functioning autism and subgroups, metabolic connections to autism, developing better screening policies to determine risk factors for vaccines since they do exist and then modifying the existing vaccine schedule for these families (rather than polarizing this issue). Themes Addressed: Better recognition and diagnosis of subgroups; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Anonymous	1. Identification of autism in girls and women 2. Research-to-Practice; Applicable interventions that can be used by caregivers 3. Identification of autism in minorities, particularly Latinos and African Americans 4. Education of the public, particularly employers about the benefits of having individuals with autism as employees 5. Life-span research, adults with ASD; functioning and life-time needs Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Jennifer Furlow, Autism Mom-Warrior	1) First and foremost ; I want researchers to develop a blood test that will be done immediately upon birth, as soon as it is safe to do so...before ANYTHING else is given (i.e...silver ointment in eyes)....this test will check for all genetic markers that indicate a vulnerability to ASD....these newborn's entire immediate care in the hospital and throughout life until the age of 5 will be dictated by a protocol which will include vaccines; schedules, doses, intervals, alternatives....medications throughout life until 5. 2) Every child determined as genetically vulnerable at birth...will be sent home with packets of info( and dvd) on diet...over-the-counter-meds.....local resources....national resources....24 hour help lines . 3) The testing will be FEDERAL LAW and it will be FREE. 4) The packets/dvd of info sent home with the new-born will be federally funded and written by the latest experts (not local people with old/incorrect information.) 5) The newborn's families will receive supportive/ check-in phone calls at regular intervals. ~SIDE NOTES~ 1) 24 hour help lines with real people answering them available for all ASD families age newborn to 21....behavior advice...melt-down advice...siblings can call, too. 2) At birth...a sibling-oriented dvd and coloring book will be given...badge of honor to pin on...certificate of "Special Sibling " to be framed...and a free ice-cream from the hospital for each sibling.Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis
Anonymous	Early detection by genetic predisposition, changes in brain, if there is an auditory processing correlation. When signs/symptoms don't appear early, new ways to identify children who regress later (2 or 3) and have met milestones up until that point. Looking at specific milestones and researching specific markers that may give insight into susceptibility. Identifying subgroups based on categorical symptoms and severity. The spectrum is too large which leaves parents trying to sift through a mountain of information to try and find an appropriate treatment for their kid.Themes Addressed: Better understanding of early signs and symptoms; Need more and increased access to genetic screening
Missy Wilson, Easterseals	diagnosis and screening tools disparities in diagnosisThemes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Megan E Sova-Tower	I think it's crucial to continue to educate the public on identification and disparities. There is still so much misinformation in regards to an ASD diagnosis- there is still gender bias when it comes to identification as well.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Parents and caregivers need greater education so that they can recognize signs and symptoms
Victoria Ekstrand, University of North Carolina -- Chapel Hill	I think pediatricians generally rely too much on diagnostic tools and not enough on parental observations and new parents are often uncertain about what they are seeing; I'm not convinced their self-reporting in the early years (years 0-2) is entirely accurate or reliable. I think pediatricians need better schooling on how to draw parents into a conversation about developmental milestones and we need better self-reporting tools.Themes Addressed: Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Kimberly Matkin	Need more providers in Lee county for therapy and testing. Also more testing for older children.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Teresa McCroskey, parent	I feel that there is not enough tools to diagnosis people with Autism any where on the spectrum early enough for them to get the help they need. Once they are identified, one has to go through hoops to receive help at schools, and in the public health services to receive what is needed for the individual. It takes several doctors visits, specialist visits, as well as psychiatrists, endocrinologists, and mental health service visits, and family practice physician visits, and fighting with schools just to receive to receive a visit to a child development center to receive the correct testing to determine that a person has Autism or one of the variations of Autism along with ADHD, OCD, or ODD for the child to receive the help he or she needs in school, or mental, physical, or emotional help. It is really sad that parents or care providers has to complain and fight so hard to fight to get help for their children or any one they care for.Themes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Need to strengthen link between initial diagnosis and access to services and interventions
Warren Schaeffer	This is a huge issue because many urban children get diagnosed after age 3 and parents do not have any resources to help get the services they need for their children! Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Need to strengthen link between initial diagnosis and access to services and interventions
Kelly Walmsley	Pediatrician a should be more versed in early signs and symptoms of autism. Pediatric neuropsychiatrist are nearly impossible to see as appointments are so hard to get with waiting times stretching to 2-3 years where I live. In addition, our one and only appointment was nearly useless because the Chinese doctor spoke such poor English that we didn't feel able to ask pertinent questions. We were pushed out the door with them referring us to a counselor for O.T. When I called the clinic, they said they only offered counseling and social skills classes and didn't offer O.T. In addition, we didn't know why we were told to get O.T., as our child has no physical deficits. Altogether useless appointment, except that we received his diagnoses, but we wonder how accurate they are. Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Xander McDonald, individual w/ autism, parent, sibling, advocate	Researchers need to partner with autistic people in all aspects of research, from research design to making results accessible. We are a valuable untapped asset. We need to address gender and ethnic bias in screening and research because too many minorities get misdiagnosed and too many females don't get diagnosed at all. We need identification of subgroups based on empirical criteria.Themes Addressed: Better recognition and diagnosis of subgroups; Improve accuracy and awareness of diagnosis of females; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Jeanne Kacprowicz, mother of 13 y/o with severe autism	Ask pediatrician at every check up after 6 months to watch for signs of autism and if there is any indicator arrange for in depth autism testing. Ask for genetic testing/ blood work as soon as diagnosed to investigate subgrouping for causes and potential other complications.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need more and increased access to genetic screeningBetter recognition and diagnosis of subgroups
Richard Kaplan, Resource Education Solutions	Unfortunately the majority of symptoms associated with Asperger (Autism) are based on non-asperger professionals making assumptions and projections of themselves. Similarly doctors once thought Dyslexics see words reversed. The diagnostic tools administered and the so called therapies used are based upon misconceptions that the traits are Asperger induced. Inadequate social skills, not interested in being social or making friends, prefer to being alone, having poor body language, not being able to read facial expressions, and require social stories to follow routines or social interactions. Themes Addressed: Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce; Improvements in the accuracy and usability of screening and diagnosis tools
Linda LaPointe, JERICHO Bureau for Exceptional Children and Adults	Identification of subgroups and disparities in diagnosis. The reduction in separate diagnosis within Autism (changes to the DSM) has increased the numbers of individuals classified under ASD and that has positively effected funding for research, early detection and services but it also does not encourage the study and differentiated treatment by the severity of symptoms and their challenges. Families with children with severe ASD characteristics/symptoms need the most help and services in understanding their childrens complex needs and challenges. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Better recognition and diagnosis of subgroups
Anonymous	Disparities in diagnosis, especially amongst girls who often are able to hide/mask symptoms. Also identifying new biomarkers or chromosomal abnormalities which can cause autiam. It's frustrating to have a feeling that my son is on the spectrum due to genetics but have a screen come back negative for existing variants.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosisImprove accuracy and awareness of diagnosis of females; Improvements in the accuracy and usability of screening and diagnosis tools
Sarah Joor	Early signs recognized by PCP with not just referral to early intervention but also referral to behavioral pediatrician & neuropsych. Wait lists are long to see these doctors & hold up additional services until diagnosis.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process
Anonymous	Awareness and screening is happening more throughout our state, but when there is a suspicion of ASD that requires further diagnosis, there are a very limited number of sites that are qualified to made diagnoses. Thus resulting in very long wait times for those providers. Also, screening providers do not have knowledge about what services they can initiate to help the children while they wait for a formal diagnosis.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions
Lucy Gratz, Job Coach/Developer Assistance	My daughter is 26 and in 1992-1995 we had limited access to diagnosis centers that were inclusive for AUTISM. We went to Kennedy Krieger where they were still decentralized and we had a PHD tell us our daughter wasn't Autisitc-too affectionate and must be MR. She will never do anything. A month ago my college graduate BS started her first full time career job in a medical lab that does cancer testing. There were no true tests then to diagnose and everwhere we were told the miracles were over at every delayed milestone-I refused to listen and kept stretching her.We were never given any guidelines, no clear diagnosis but PDD for some time until convinced she was a Autism spectrum child.When under 4 pediatricians would say -first child ear and infection problems-just wait. We lost 2.5 yrs. We got her into chld find which began speech therapy and special ed preschool at 3. Could have started at 6months. Many people i know whose child had aspergers weren't identified so soon-took thru elementary or middle school-even harder for thm to access services withno clear early diagnosisThemes Addressed: Better understanding of early signs and symptoms; Need to strengthen link between initial diagnosis and access to services and interventions
Elena	Disparity in diagnosis for women (vastly underdiagnosed), better diagnosis for adults who grew up when the diagnosis was very narrow or the "treatment" option was institutionalization. Women of a certain age and up are still failing to find adequate diagnosis because of clinicians' failure to understand different presentation based on gender, masking by adults, etc. Far greater access to diagnostic screening for adults.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Improve accuracy and awareness of diagnosis of females
Anonymous	I don't know that this it the "most important" priority or shortfall in general, but what has struck me in seeking diagnosis for myself is the difficulty in finding screening for adults with "high functioning" or Level 1 Autism, and getting providers to not dismiss the word of a female patient who has studied and learned tricks to mask the observable signs of autism. Just because I seem to act normally doesn't mean it's not a ton of exhausting, confusing work for me to accomplish that facade.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Improve accuracy and awareness of diagnosis of females
Serein Lambert	Disparities in diagnosis is important. People of color, low income families, women and girls often have serious blocks to diagnosis and services.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Improve accuracy and awareness of diagnosis of females
Artea Lombardi, Parent of Eden Autism Services	Depending upon the severity of the challenge, parents should be concerned about the diagnosis and screening and should ask at least two or three professionals for their opinions. Sometimes, if the child is younger, the school system would want to keep the child in district to save funds rather than outside services that would be beneficial in the child's interest. If the child is older, the same applies about getting more than one opinion to be sure the adult child receives the service he/she deserves to become as independent as possible.Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Improvements in the accuracy and usability of screening and diagnosis tools
Dyan Spruill M.A., CCC-SLP, The Floortime Center	There is a significant problem according to clinical experience and parent feedback regarding the diagnosis and screening of Autism Spectrum and where on the spectrum children may present. Typically the evaluator has little relationship with the child, which is crucial for understanding his or her strengths or weaknesses and they only get a small glimpse of the child's abilities.Themes Addressed: Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	identification of subgroups, biomarkersThemes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Better recognition and diagnosis of subgroups
Lissa Probus, ASBG	early screening for biomarkers disparities in diagnosis, especially for those with high IQ symptomsThemes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Lucy Beadnell	There is no strong, progressive standard for screening infants for autism as a universal practice among pediatricians, despite the immense values of early detection and intervention.Themes Addressed: Better understanding of early signs and symptoms; Universal screening for ASD is needed
Jessica Philips, Commonwealth Autism	Too many pediatricians are still telling families to "wait and see" instead of referring for a diagnostic evaluation. The AAP has outlined two levels of screening (Johnson et al., 2007): Level 1 and Level 2. . A positive Level 1 or Level 2 screen should lead to a referral for a diagnostic evaluation. Themes Addressed: Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce; Improvements in the accuracy and usability of screening and diagnosis tools
Anonymous	Most doctors do not have the training to identify autism and do a "wait and see" approach which is detrimental to families needing to get on wait lists for services and diagnosis. Doctors also do not have the necessary training to test for underlying health conditions. A simple change from the AAP could be a recommendation that every child with early signs of autism be given an Organic acids profile test. This metabolic test can help identify a number of highly co-morbid conditions among children that carry an autism dx. Also, babies should be screened before vaccinations occur to determine that the baby can indeed excrete heavy metals found in vaccinations appropriately. Lastly, I have noticed that what was appropriate to what a child should be able to do 10 yrs ago (ie. say x number of words by age 2) has been "dumbed down" so expectations are actually less. This is extremely detrimental because a child is now expected to know less and do less than a child from 10 yrs ago would have been able to do, at the same age. It puts parents in the thought process that their child is not behind and really they are. This screening tool was something available in my child pediatric office and I saw the glaring difference from what I had seen in previous years with my older children! I do not know who is putting out this screening tool but it is extremely harmful to families! So I advocate that screen tools are consistent and not based on a children at the bottom of the curve. Themes Addressed: Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce; Improvements in the accuracy and usability of screening and diagnosis tools
Susan Sheldon, Parent	Pediatricians need to screen children at well-checks and vaccination visits for autism, especially in minority and lower income populations, who may not be as aware of autism and developmental delays.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Need to increase/decrease early screening and diagnosis of ASD in children
Catherine Milian, Mother/Occupational Therapist	There are many professionals causing red flags in the diagnosis and or screening of Autism. The spectrum is so large and different in every child or adult. The saying is that if you meet 1 person with Autism. You have met 1 person with Autism. Development professionals are ill equipped to handle the bedside manners of giving parents the Diagnosis of Autism. Parents are left to find and search for the local resources. Though some would love to hide their child's Autism because of society's treatment. Acceptance is a key element of copying as a family. The studies show diagnosis as early as 6 months. Though early screening has it's benefits of early intervention. The problem lies on the funding of getting a child what they need. Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Andrea Colburn, parent	Early signs and intervention. Parents should be taken seriously when they bring concerns to the pediatricians. Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Anonymous, parent	Make screening part of standard pediatric care. Doctors should be more open with parents.Themes Addressed: Practitioners need to listen to and consider parent concerns about early signs and symptoms; Universal screening for ASD is needed
Joe Hickey, CHSC Dubuque	I think recognizing symptoms if the first major step. Parents and caregivers, need the tools to recognize, then treat accordingly. Autism, being a spectrum disorder, changes throughout a persons life. Extensive planning is required for short and long term goals. Transitions for individuals must be included. Transition, affects individuals from preschool through adulthood. I think a primary focus on it is essential.Themes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	I think there is a misconception, which impedes early diagnosis, that language delay is the cornerstone of autism. In other words, that if an infant/toddler has acquired language early or on schedule, he/she is unlikely to have autism. I would like to see better research and education about the early signs of autism, as well as more information about what the benefits of a diagnosis can be. I personally knew there was no cure for autism and therefore put off getting a diagnosis longer than I should have. Educating pediatricians and the public could be a good first step. Themes Addressed: Better understanding of early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Access to evaluations and therapy tend to take weeks or even months. General pediatricians usually aren't competent in developmental delays and don't screen routinely. Girls are systematically underdiagnosedThemes Addressed: Improve accuracy and awareness of diagnosis of females; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Diana Autin/Lauren Agoratus, Statewide Parent Advocacy Network/Family Voices NJ	Health disparities need to be addressed , deserve targeted attention, and result in poorer outcomes. Why is this objective 'far below?' We note 'only about 20 percent of children with ASD are being identified early.' There needs to be increased use of screening, and raising awareness of early diagnosis/intervention. Although 'Some progress has been made in' diverse communities'' this is an area to address for early diagnosis/intervention. Research is needed to understand ' implications of the change in diagnostic criteria.' We are concerned 'almost half the children are not progressing through the system to diagnosis and early intervention." Future research needs to focus on 'identifying and removing the cultural and logistical impediments.' We have collaborated with Children's Specialized Hospital in their community-based quick peek screenings targeting underserved communities; a bilingual Family Resource Specialist is at each screening and immediately connected to each family whose child 'fails' the screen. This project demonstrated high rates of follow-up, the highest rates of follow up were for Spanish-speaking families. This promising development deserves further research. We agree research needs to be expanded in the area of 'immune and gastrointestinal function measures.' However, these were addressed at IACC for years so we are unsure why this hasn't happened yet. We agree 'more investment is needed for community-based studies.'Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions
Nat Blagoj	Biomarkers, identification of subgoups. TREATMENTS. Carefully designed treatment trials that pay attention to underlying biomedical pathologies should be THE biggest priority.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Better recognition and diagnosis of subgroups
Angela Gardner	There needs to be improvements made especially for children of color in accessing early childhood screening and diagnostic evaluations because they are getting diagnosed later. Pediatricians who work with these families need more training especially if they serve individuals where English is a second language. There needs to be more coordinated outreaches for communities of color for families to have the information about what signs and symptoms of ASD they need to look out for in their children. Also more coordinated outreaches need to also target social workers, preschool teachers, elementary school teachers, school administrators to look for signs and symptoms of ASD with their students and where they can direct families to go to get evaluations and services.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Melissa Diamond, A Global Voice for Autism	Disparities in diagnosis, particular for minority communities. These communities should be targeted with culturally appropriate messaging in order to encourage parents to screen their children for autism and receive support. Training doctors from these minority communities in order to reach out to their communities about the importance of autism screening is key in getting the word out about early diagnosis and ensuring that doctors serving these communities understand the stigma within particular communities and the culture of the community so that they can speak to families in a way that respects where they come from and makes them feel comfortable seeking out support.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Tricia Zarro, Mrs.	identify biomarkers identify sub groups treatmentThemes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Better recognition and diagnosis of subgroups
Catherine	General Practitioners need to take parents concerns seriously or talk to parents about their possible concerns EARLIER than later and start testing earlier than later. Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Anonymous	1. Pediatrician education is vital at Birth through 2 years of age in signs of ASD. 2. Early signs & Symptoms: Listen to Ami Klin: A new way to diagnose autism-Ted Talk-Ted.com https://www.ted.com/talks/ami_klin_a_new_way_to_diagnose_autism/transcript?language=en 3. Birth to 3 early education intervention is critical, but lacking in so many Wisconsin school districts. Carolina curriculum? There's a crisis in qualified educators (B to 3; pre-K through 12 grade) compounded by educational administrators' institutionalized ignorance, institutionalized inertia, and in some cases, institutionalized indifference. 4. For identification of subgroups, see Michell Garcia Winner's Social Thinking -Social Communication Profile https://www.socialthinking.com/Articles?name=Social%20Thinking%20Social%20Communication%20Profile 5. Disparities in diagnosis: Read 5/25/2013 "Two Fatal Technical Flaws in the DSM-5 Definition of Autism" by Allen Frances (Duke University professor emeritus and chairman of DSM-IV task force) http://www.huffingtonpost.com/allen-frances/two-fatal-technical-flaws_b_3337009.html Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Better understanding of early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce; Better recognition and diagnosis of subgroups
Rosanna Armendariz, Autism Community Network of El Paso	Studies have shown that African-American and Latino children are diagnosed later and therefore miss out on life-changing early intervention services. For example, where I live in El Paso, Texas, a predominantly Mexican community, there is only one Developmental Pediatrician for a city of 800,000 people. Most parents that have met with her agree that she is generally rude and unhelpful. Hence, those who can afford to do so (mostly military families stationed at Fort Bliss) travel to other cities to seek evaluation and diagnosis for their children. We need more qualified professionals willing and able to evaluate for and diagnose autism, especially in minority communities. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Lisa Downey	Diagnosing women and girls on the spectrum takes far too long. Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process
Anonymous	Early detection is critical. Pediatricians should have mandatory training on how to spot potential ASD problems and should recommend screening if the parents raise any concerns. Our doctor told us to wait until the next check up (twice) which delayed our diagnosis by a year. Research into the gut/brain connection, methylation and other medical issues is more important than finding "the gene" that causes autism. We need further research that validates anecdotal evidence relating to the theraputic effect of certain natural supplements and other treatments. Parents are more concerned with finding effective treatments than discovering the How and Why behind autism. Additional, open-minded research into vaccine safety is needed, along with recommendations to make vaccines safer (e.g., remove the aluminum adjuvants).Themes Addressed: Better understanding of early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Kelly Valenta	Subgroups, help for older children and adultsThemes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Better recognition and diagnosis of subgroups
Gene Bensinger	Basic scientific research grants must be made without the burden of ideological litmus tests promoted by some neurodiversity leaders in order to uncover biomarkers to improve the quality and timing of autism subgroup diagnoses. Early autism screening and access to behavioral therapy and quality healthcare must be advanced in underserved rural, economical disadvantaged, and culturally diverse communities. Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to increase/decrease early screening and diagnosis of ASD in children; Better recognition and diagnosis of subgroups
Anonymous	The core deficits of Autism are challenges with social communication, emotional regulation and play skills. Focusing on these challenges during the screening process is of paramount importance. Behaviors of concern should be seen in the context of sensory processing challenges, challenges with social communication (verbal and non-verbal) and difficulties with emotional regulation. Play deficits should be seen as a window into the challenges faced by the child and should be addressed at the earliest possible moment. Reminding parents that playing with their child, even when that child has a delay in social communication, is the way to stay tuned in, connected and to share discoveries about the world. Meeting the child where she is allows the care-givers to regulate and adapt their interactions to meet the child's unique humanity.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Parents and caregivers need greater education so that they can recognize signs and symptoms
Chuck Hartseil	Doctor response to identification for parents lacks empathy. Doctors need better training about "bedside manner", eventual outcomes for individuals and how to refer parents for supports. Themes Addressed: Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Cheryl	ID of subgroups, early signs, diagnostic toolsThemes Addressed: Better understanding of early signs and symptomsImprovements in the accuracy and usability of screening and diagnosis tools; Better recognition and diagnosis of subgroups
Anonymous	Make it mandatory CEU for all pediatric board certified professions to learn about autism, how to diagnose and what to tell parents when they miss milestones. Make it part of the screening, too many children leave the Drs office and preschool with delays that could have been easily spotted and referred to specialist. Services are difficult to find across the board. From trained therapists, open availability instead of wait lists that last years for ABA and Drs. When starting out with noticing the first signs parents go to their pediatricians - who are unable to diagnose and do not have the training to urge parents to seek services for developmental delays. Start there! Give them the resources in the office. Most parents are unable to navigate the tricky business of specialists and insurance offer case managers to help guide them with all the resources. Have every child screened at every check up. Have newborns tested for markers. Based on CDC autism estimates, declare autism an epidemic and public emergency. We need to treat autism with the urgency it warrants: 1 in 68 children are living with autism in the United States. Define and collect a true census of individuals affected by autism. It is important to indicate that four year old estimates based on surveys do not work. Real numbers and details such as age groupings are urgently needed. Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Need to strengthen link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce; Universal screening for ASD is needed
Linda Yin Lee, Self employed pediatric occupational therapist	- early signs and symptoms for parents - early signs and symptoms especially for pediatricians and how to refer to a specialist or early intervention instead of doing the "wait and see" - that knowing colors and numbers and letters in advance of age expectations is not a sign of intelligence and may prevent other learning if reinforced excessivelyThemes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Denise Rozell, Easter Seals	Easterseals encourages the IACC to prioritize research on decreasing the racial and ethnic disparities in the diagnosis and access to treatment in children and adults. Additionally, there continues to be difficulties in obtaining diagnosis and services in a variety of other populations where specific attention should be provided: rural, adults, families with low incomes, dual language learners, and communities of color. Screening and diagnosis for the very young has improved through early intervention services, but additional work in this area continues to be important. Obtaining and paying for screening and diagnosis in communities with low socioeconomic status continues to be a challenge, even though Medicaid should be covering these services under its EPSDT program. The fact that many states are still not covering a range of autism services under EPSDT or are paying rates so low as to deny access to care coupled with the Medicaid coverage gap and the expense of the services means that many children are not receiving the services they need. The importance of early intervention services for all children cannot be overstated. The total annual cost of providing services to people with autism is presently $35 billion in direct and indirect costs to care for all individuals each year over their lifetimes (Ganz, 2007). With early diagnosis and intervention, the cost of treatment can be cut by two-thirds over the lifespan (Chasson, Harris, & Neel, 2007). Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Need to increase/decrease early screening and diagnosis of ASD in children
Margaret	Educating doctors to identify symptoms earlier and help parents get appropriate help.Themes Addressed: Families need emotional support following diagnosis and assistance in navigating access to services; Parents and caregivers need greater education so that they can recognize signs and symptoms
Matthew Carey, Autism Parent	We are still under diagnosing autism in this country, and diagnosing late. Here are some points to consider: Each CDC prevalence estimate includes a substantial number of 8 year olds who were identified by the ADDM teams but were previously undiagnosed. This fact seems to be glossed over in most discussions. Clearly we are still missing a substantial number of autistic children. We have been getting better at identifying, which means older children and adults are vastly under diagnosed. We need to rectify these problems. We need to accept that fact and act upon it. Age of diagnosis is not dropping. We need to understand why and we need to change that. We need objectives in the Plan to: 1) Create screening tools for older children (late grade school through high school). 2) Create screening tools for adults. 3) Ensure that screening/diagnosis tools are valid for minorities and females. 4) Find subpopulations where age of diagnosis is lower and understand why so we can develop strategies for the rest of the population. In each category above, the screening tools may need to be very different for screening those with other (or misdiagnosed) disabilities and those who are struggling because they have no diagnosis yet. For example, we may need a screening tool for older students in special education and another for those who are struggling in mainstream. We absolutely need to do better here. Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Need to increase/decrease early screening and diagnosis of ASD in children; Improvements in the accuracy and usability of screening and diagnosis tools; Better recognition and diagnosis of subgroups
Lori McIlwain, National Autism Association	NAA encourages the creation of universal recommendations for diagnosis and screening with particular emphasis on minority and female populations, and universal access to these recommendations. To help bridge current gaps, NAA encourages the creation of a central channel, such as Autism.gov, which can be more easily shared among advocacy groups, media outlets, and local channels, thereby increasing the chances of consistency and exposure among all populations. Overall, we feel a comprehensive federal autism plan is needed.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesImprove accuracy and awareness of diagnosis of females; Universal screening for ASD is needed
Angie Calhoun, Mecklenburg County Pubic Schools	Early detection and intervention of, of course, KEY. There has GOT to be more careful differentiating of diagnoses, though, when it comes to ASD and other developmental disorders. The decision to diagnose is way too quick in many cases and the entire story is often not told. Parents need to know that various symptoms could mean a multitude of issues, and not just jump to autism. Screenings should be done EARLY and often...especially if a parent is concerned. And clinicians need to be SPECIFIC when talking to parents about their child's particular symptoms. Autism includes a WIDE spectrum. We cannot cookie cutter treatment.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	I believe more attention should be looked at by the medical doctors at the 3-6-9-12 month visits developmentally and not just worry about the shots. Talk to the parents about what the child is doing. Also again at the 1-2-3 year visits again, ask those questions about WHAT is the child doing.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Jessica	Early signs and treatment plan support after diagnosisThemes Addressed: Better understanding of early signs and symptoms; Need to strengthen link between initial diagnosis and access to services and interventions
Allan D. Hollander	Reducing disparities in screening due to socioeconomic differences is a very important policy goal, as many have noted. That said, I am not persuaded that early diagnosis is always to the good. Often the aim is early intervention, and the risk here is that children are rushed into therapy based on future expectations of impairments, rather than difficulties at the present moment. In many circumstances it may be best to adopt a wait-and-see approach to childhood development. Autistic people are extremely cognitively diverse, and developing a classification of autistic subtypes would be very helpful in guiding therapies and educational plans. Care must be taken in developing this taxonomy though; basing it on cognitive and sensorimotor strengths and weaknesses seems a good approach here.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesBetter recognition and diagnosis of subgroups
Ellen Silverman on behalf of Maria Nardella, WA State Department of Health	? Please retain and elevate the focus on 'the development of culturally sensitive diagnostic tools that can be more easily used in both clinical and research settings is urgently needed.' Add to this the need for culturally responsive/appropriate screening tools in multiple languages. This is a need we hear about in Washington State with increasing frequency and intensity, particularly for our recent immigrant populations. ? Please continue a focus on validating and broadly disseminating use of the M-CHAT-R/F and the Infant-Toddler Checklist. ? Continue to support strategies that promote family-to-family support and assistance with system navigation. ? Please add provider and parent education for routine developmental screening for all children according to the Bright Futures schedule Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Families need emotional support following diagnosis and assistance in navigating access to services; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce Improvements in the accuracy and usability of screening and diagnosis tools
Marie Arnold	Symptoms, biomarkers, disparities in diagnosis. In my observation the severe reactions immediately following vaccines have been being ignored, rather than seeing that here is a direct correlation of reaction following vaccines, whether it is hours, days or weeks following the injection(s). Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesBetter understanding of early signs and symptoms
Anonymous	Diagnosis of adult autistic women, previously missed due to "pretending to be normal," causing burnout over decades of this pretending. More training of those doing diagnosis of how adult autistic women present.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Jason Bourret, New England Center for Children	We suggest an increased emphasis on research evaluating methods for early identification of behavioral symptoms of autism. We also suggest that the IACC promote research examining effective methods for training doctors, teachers, and caregivers to identify behavioral symptoms of autism.Themes Addressed: Better understanding of early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous, The Childhood League Center	Early intervention is critical and discernible signs of autism appear in the earliest months of life. According to the CDC, research indicates up to one half of parents develop concerns before 12 months, and 80%-90% by 24 months. Screening needs to occur when a caregiver raises concerns, the 'wait and see' approach must stop. When screening indicates developmental problems, INTENSIVE early intervention that is appropriate and evidence based for young children and families needs to begin quickly to have the greatest impact for change (such as approaches that are developmental, relationship-based, play-based and parent-implemented). Delayed intervention due to waiting for a formal diagnosis, even for a few months in a young child's life can make a big difference because development happens so rapidly at that age and children can fall behind very quickly. Further research needs to help define the biological components of autism and possibly create tests that look for specific markers, as well as define subgroups and match those subgroups with the best intervention. Defining biomarkers would help clinicians determine the possibility of developmental differences early on, giving families an earlier start with the right child-centered interventions.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Gilda M Sanchez	Disparity of biomarkers screening at pediatrician/primary care. Genetic tests and pharmacogenomics must be implemented for those who have a diagnosis of autism.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Need more and increased access to genetic screening
Catherine Camp Boyle, Autism Housing Pathways	Identification of subgroups is needed to tailor treatments, and to avoid triggers that might worsen presentation. In addition, we need to pay attention to the need to screen adults, particularly in settings like homeless shelters and psychiatric facilities, to ensure people receive appropriate services. It would be helpful to take a tool like the AQ10, developed by Cambridge University, and turn it into an app that could be used by frontline case workers to do initial screening and referral.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Improvements in the accuracy and usability of screening and diagnosis tools; Better recognition and diagnosis of subgroups
Angela Lello, Autism Speaks	Progress has been made towards increasing the general public's awareness of autism, but more needs to be done. For example, there is a lack of validated biomarkers, which not only hurts efforts to speed diagnosis, but also inhibits the development of new therapies. Research is needed to evaluate and improve the uptake and impact of early screening by pediatricians, educators, and other community stakeholders. Attention should also be paid to simplify and expand access to care by streamlining and expediting the referral process from screening to diagnostic confirmation and receipt of treatment. While capacity-building in underserved communities deserves additional support, other approaches, including but not limited to developing and implementing more efficient and culturally competent diagnostic tools, should be prioritized. If these instruments can be administered reliably by non-specialists instead of trained professionals, it would enhance access and dramatically reduce time of first concern to diagnosis. Validated measures of subtypes of autism are needed. Diagnosis and delivery of treatment will always be inhibited as long as individuals with autism are considered as a single group. Therefore, investment to understand and properly categorize specific forms of autism is needed. Discussions of early detection should not take place in the absence of early intervention, thus efforts to improve earlier access to evidence-based care are of critical and equal importance.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Better recognition and diagnosis of subgroups
Anonymous	Early intervention is key and identifying infants and toddlers with concerning signs should be a priority. Well-meaning pediatricians put off evaluations in the name of "give him time" and instead, precious time can be lost. Better to evaluate and find nothing than to not evaluate and lose intervention time. Research and assess the maternal immune system for things like Candida yeast overgrowth...the mother's compromised immune system could set the stage for a compromised immune system in a gestating child. Services for youth with challenging behaviors need to be increased. Youth need hospital beds sooner and not later when in a crisis. This is hard on everyone. Themes Addressed: Better understanding of early signs and symptoms; Need to reduce the time to diagnosis by improving service access and diagnostic tools/process
Nicole	Biomarkers, identification of subgroupsThemes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Better recognition and diagnosis of subgroups
Annie Acosta, The Arc	Diversity. Racial/ethnic minorities and persons with lower socio-economic status continue to be underserved in ASD screening, diagnosis, early intervention, and other services. The research agenda must include increased focus on these groups. Strategies could include targeted recruitment, including the use of incentives, for under-represented groups. Attitudes. While the awareness of ASD has increased dramatically, acceptance and understanding lag far behind. We should track public attitudes toward ASD as part of efforts to help reduce the stigma. Screening Practices. Only about 20% of children with ASD are being identified by the age of 3. More research is needed to evaluate and improve the uptake and impact of early screening by family members, healthcare provides, educators, and other community stakeholders. Accessible Screening Tools. Cost, time to administer, and cultural sensitivity can be significant barriers to early screening. Royalty-free and culturally competent tools that can be administered reliably by non-specialists should be prioritized to dramatically reduce time of first concern to diagnosis. Streamlining Entry to Services. Early intervention has proven effective in improving outcomes for people with ASD, yet access to timely services remains a persistent barrier. Studies must address strategies to expedite the process from screening to the receipt of treatment. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesImprovements in the accuracy and usability of screening and diagnosis tools
Patrick Johnson, American Academy of Pediatrics	The American Academy of Pediatrics agrees that the promotion of early screening is of vital importance. As the IACC Strategic Plan states, 'in infants at high genetic risk for ASD ['] symptoms of autism begin to emerge as young as 6 months of age in those who later develop ASD.' Providers should start screening early (4 months of age) by looking for atypical social development and stereotypic movements, with formal screening tests beginning at 6 months of age. However, parents should not expect that all children with ASD will be properly identified by 6 months of age, as the trial groups have so far only focused on high-risk infants (with siblings who have ASD). The Plan states that only 20 percent of children are identified with ASD by 3 years of age, a crucial concern given how beneficial early identification and intervention can be to children with ASD. AAP agrees that repeated screenings at the ages of 6, 12, and 18 months will help to raise the number of children identified early. Parent concerns should also be addressed at each well child visit throughout the first few years of life. Earlier screening/diagnosis provides for greater opportunity for early intervention, improved transition to special education, and other support services. However, specific screening should occur between 15-18 months of age, and again at 24 months or sooner as parental concerns arise.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions; Practitioners need to listen to and consider parent concerns about early signs and symptoms
Hannah Russell, Primrose School	Universal screening should be employed by all physicians by doing the MCHAT-R at 12 and 18 months for all children. Early childhood educators, and parents, should also be taught that this screening tool can, and should be used, at home, and in preschool classrooms to identify possible signs of Autism. It is easily accessible on the internet. Easy referrals to Early Intervention should be employed, not the current "wait and see' model in use now. Promoting early screening, online MCHAT-R access, and teaching educators, parents, and physicians how simple referrals to Early Intervention are, can be an efficient and cost effective way to close the gap between screening, diagnosis, and needed support for these children. Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce; Improvements in the accuracy and usability of screening and diagnosis toolsUniversal screening for ASD is needed
Anonymous	Females of each age group need appropriate screening criteria, the screening needs to be done on all age groups, and access to diagnosis needs to be accessible. Adult and elderly adult males, especially with milder autism, have generally never been screened. 1 in 70 people means a lot of people; most would not need 'services', but rather access to education and opportunity to begin to learn about themselves. Autistic people can benefit greatly from self-knowledge and education at any age. There need to be much better diagnosis procedures for adults, who have had decades to learn coping techniques but still suffer in many ways and don't know the reasons -- so they cannot help themselves as well as they could with self-knowledge. Individual adults who lack an early, documented history of autism are excluded from diagnosis, per the DSM 5 (according to my doctor -- if incorrect, please clarify the DSM 5's wording so well-educated, supportive doctors do not feel their hands are tied). Why should the lack of live witnesses to one's childhood, preclude diagnosis for people with mild autism who were born decades ago?Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosis; Improve accuracy and awareness of diagnosis of females
Dr. C. Rick Ellis, Spectrum Psychological and Forensic Services	Tests are outdated do poorly at identifying females and minorities. NO published test takes into consideration past behavior of the child or adult as required by DSM-5. The Autism Assessment Scale for Children(Ellis & Hebert) has been proved to accurately identify these populations, but no publisher is willing to expend resources and are still committed to revisions of the same first generation assessment instruments.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Improve accuracy and awareness of diagnosis of femalesImprovements in the accuracy and usability of screening and diagnosis tools
Renee Vogt	Diagnostic tools for females (girls and women). Earlier detection and accommodations provided. Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to increase/decrease early screening and diagnosis of ASD in children; Need to strengthen link between initial diagnosis and access to services and interventions
Anonymous	Early diagnosis of sleep disturbance and intervention , both behavioral and medical . There are numerous resources for sleep disturbance in children with ASD , however many parents do not access them and many are not aware of them. Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Parents and caregivers need greater education so that they can recognize signs and symptoms
Stephen Holtsbery	Girls and women with Autism need to be researched more. Earlier diagnosis and interventions could be very helpful. Allocating more resources to adults of all ages to support them finding and keeping jobs will be beneficial. Helping parents deal with picky eaters and nutritional issues for children with autism will be valuable. Dealing with meltdowns for parents and teachers needs to be dealt with.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to increase/decrease early screening and diagnosis of ASD in children
Chitra Raman, Parent	I believe there have been tremendous strides in early diagnosis of children on the spectrum. It is the ultimate OUTCOME of that screening that is problematic. What do teachers DO with a percentile, a position on a pie chart, or a graph? How should they target their teaching by harnessing strengths rather than perpetuating weaknesses? Without clearer standards and articulation of the ultimate GOAL of testing, the best tests do little more than assign children to a hierarchy under a species classification. Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
April Banerjee, People With Disabilities Foundation	People With Disabilities Foundation (PWDF) is a ' 501(c)(3) nonprofit agency with expertise in medical (psychiatric and/or developmental)-legal issues. PWDF bases our recommendations on our 16-year history of providing legal services, including for SSDI and SSI, for people with psychiatric and/or developmental disabilities. PWDF is planning to address issues of aging with autism in our next public seminar in fall 2016. We have identified disparities along gender, ethnicity and income being areas of concern when it comes to diagnosis, treatment, services (including for employment, housing, health care and education), and long term care for adults with autism. Through our research and our 16 years of providing legal services to clients with ASD, we are concerned about those who were not diagnosed or were misdiagnosed and institutionalized before autism was more commonly discussed and diagnosed. Accurate diagnosis, resources, services, and treatment are critical for adults with autism to lead their most fulfilling lives through independence and community integration. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesImprove accuracy and awareness of diagnosis of females; Need to increase/decrease early screening and diagnosis of ASD in children
Anonymous	Need more sensitive measures for higher functioning ASD and Aspergirls. More educational law to help with IEP identification and covered services within the schools.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Improvements in the accuracy and usability of screening and diagnosis toolsBetter recognition and diagnosis of subgroups
Heather Parsons, American Occupational Therapy Association	We recommend the IACC consider how best to ensure that a wide array of early childhood services providers, including occupational therapy practitioners, play a key role in early detection and diagnosis of autism spectrum disorder (ASD). In order to bring down the average age of diagnosis we need an 'all hands on deck' attitude towards screening and diagnosis, utilizing all qualified practitioners, especially practitioners who may already have a relationship with a child's family. For example, OTPs can support the screening process through administration of screening tools such as the Modified Checklist for Autism Spectrum Disorders for Toddlers (M-Chat), or parent or caregiver report measures including The Social Communication Questionnaire (SCQ; Al-Qabandi, Gorter, & Rosenbaum, 2011). We also recommend that the IACC continue to focus on how to reduce the underdiagnosis and delayed diagnosis of ASD among communities of color. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anna Frances, autistic 17 year old	Educate pediatricians and other doctors. Make it a class in med school. Teach the people who swear to do no harm about the reality of autism. Early warning signs can include: large heads in infants; skipping or having trouble with developmental steps such as crawling; allergies; inexplicable anger; sensory sensitivities with food, hearing, clothes; social sensitivities; any kind of processing dysfunction; etc. These are all problems that any parent should be able to name and have their pediatrician be educated enough to suspect autism spectrum disorder, and have a list of questions about the immunological, neurological, psychological and social aspects of their specific child in order for a more thorough and helpful diagnoses. They should then be referred to specialists for genetic, metabolic, sensory, neuropsychological testing.Themes Addressed: Better understanding of early signs and symptoms; Need to strengthen link between initial diagnosis and access to services and interventions; Practitioners need to listen to and consider parent concerns about early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	All children under the age of 4 should be screened for autism symptoms, starting as early as age one. Older children should be screened if there is any concern about health and development All children demonstrating symptoms of autism should have MEDICAL testing' not only the standard genetic panels, and EEG's, and MRIs, but also testing for gastrointestinal dysfunction, and neuro-immune dysfunction, and autoimmunity. Children with symptoms of regression, and loss of language, need to be very carefully evaluated. These children often have medical issues affecting their development. Identification of sub-groups is vitally important. There is a wide disparity in autism types, and the labeling of individuals previously labeled as Aspergers or PDD-NOS, as 'autism spectrum disorder"'while helpful in acquiring treatment'when these individuals promote "neurodiversity" as being a positive thing, it can be VERY damaging to individuals (and their families) with more significant needs and medical syndromes. Individuals with serious communication, behavioral, and health challenges need INTENSIVE treatment, but are often being branded by higher functioning Asperger types and their families as "not accepting" or "celebrating" their 'differences'. I find the attitudes marketed by the neuro-diverse self-advocates to be extremely damaging on many levels. This issue can be solved by defining autism into subgroups. Early medical testing and screening should be done with all children, PRIOR to vaccines, to determine if their are vulnerabilities or sensitivities to vaccine reactions or injury. Again, it is important to identify sub-types, identify medical and developmental issues, and treat any related medical issues. This will require genetic and medical testing. It is also important to identify neural-processing differences in individuals, so that treatment can be customized to optimize outcomes. This might require functional MRIs. Themes Addressed: Better recognition and diagnosis of subgroupsUniversal screening for ASD is needed
Liza Krassner, Parent and UC Irvine Public Health employee	There are huge gaps and in the overall diagnosis of ASD. Part of the challenge is the lack of awareness and public education on ASD that can also change over time. If early diagnosis is a key factor in directing treatment, where to get treatment is the next issue and there are huge disparities in here, too.Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Parents and caregivers need greater education so that they can recognize signs and symptoms
Marc Freeman	When my son was in school, diagnosis, early signs and symptoms had huge gaps but were a major priority for us. We covered the gamut from ADHD in elementary school to Bipolar disorder in middle school to Autism in high school. It wasn't until high school that we were even aware of any services available to us. Now that he is trying to get into vocational school, it feels like we are starting all over because now he is considered an adult and services are almost non-existent in Texas.Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/process; Need to strengthen link between initial diagnosis and access to services and interventions
M. Hail	Identification of subgroups, and diagnosis and screening toolsThemes Addressed: Improvements in the accuracy and usability of screening and diagnosis tools; Better recognition and diagnosis of subgroups
Yvette Cunningham	Most difficult issue for us was finding a Dr. To get a diagnosis, the earlyer the better. Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Jade Sands, autistic adult	We need to improve diagnosis and screening methods for women and people of color, as well as for adults, who may have been missed as children due to differing diagnoses available and prevalent theories about autism at the time.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Improve accuracy and awareness of diagnosis of femalesImprovements in the accuracy and usability of screening and diagnosis tools
Kristie Patten Koenig, New York University	disparities and early diagnosis and screening for minority groups which requires more parent outreach and training and outreach to primary care providers serving those communities. also disparities in service. Has to rely on excellent public school models as a "free service". Comprehensive public school models must be studies as a way to reduce disparity in service provision. ASD Nest in NYC DOE is one model that I am PI of that needs to be studied and replicated and models that serve students requiring increased supports. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesParents and caregivers need greater education so that they can recognize signs and symptomsWorkforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	I think one of the biggest problems is that the doctors are not on the same page when it comes to urgency of early diagnosis, I was told my child was hitting all of his developmental marks and it wasn't until he was 3 and still non verbal that the doctors would even consider an evaluation for him, there needs to be way more focus on screening techniques for infants so that the diagnosis can be made as early as possible in order to start early interventions.Themes Addressed: Better understanding of early signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Diagnosis and screening Disparities in diagnosisThemes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Improvements in the accuracy and usability of screening and diagnosis tools
Anonymous	diagnosis and screening tools; also disparities in diagnosisThemes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Improvements in the accuracy and usability of screening and diagnosis tools
Kristine Nicholas	Biomarkers and identification of subgroups: Like many thousands of other parents, I witnessed my child change overnight and lose all social awareness within hours of receiving vaccines. We need to: 1) Take these parental eye-witness accounts seriously. 2) Assign top priority to identifying which children were permanently injured as a result of their vaccines. 3) Assign top priority to researching WHY these children are more vulnerable than their peers. 4) Remove all ties to the pharmaceutical industry and those that profit from them when funding and considering results from research studies involving the vaccines that these corporations stand to profit from. 5) Allow exemptions for anyone who might be at risk of a vaccine injury. Allow philosophical exemptions to any family that expresses concern at least until proper screening tools are in place to weed out those children who are at risk of vaccine injury.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosis; Practitioners need to listen to and consider parent concerns about early signs and symptomsBetter recognition and diagnosis of subgroups
LOUISE KATZ, ATTORNEY	DISPARITIES IN DIAGNOSIS. I often represent families seeking services in CA which depend upon a diagnosis of ASD. To that end, I often review diagnostic reports which lack important substantive information about early development especially for teens or adults when parent memories are not fresh. Often this is because parents are not given preparatory material/instructions to prepare for interviews such as creating a time line of development, info about concrete thinking, looking at home videos etc. Diagnostic office based protocols are also often used as substitute for real-world observations where functioning may be very different. Too often school visits/observation or school records are used when in fact school programs create a level of support and consistency that does not exist at home or in the community.Themes Addressed: Need improvements in access and accuracy of adult and adolescent diagnosisNeed to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesParents and caregivers need greater education so that they can recognize signs and symptoms
Anonymous	I thinks that ALL those areas are important especially diagnosis and disparities in diagnosis.Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional linesImprovements in the accuracy and usability of screening and diagnosis tools
Sarah, Heritage Christian Services	Every parent needs the support from their primary pediatrician and a specialist in behavioral developmental medicine. Early detection and treatment is so important.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Families need emotional support following diagnosis and assistance in navigating access to services
Anonymous	Disparities in diagnosis. Female autistics have been ignored or misdiagnosed with mental health disorders for too long. The stigma of an incorrect diagnosis can keep much needed assistance out of reach. Functioning labels are harming autistics of all kinds.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Improvements in the accuracy and usability of screening and diagnosis tools
matt, parent of ASD child	Diagnosis needs more attention. Especially in females who tend to mask symptoms with neurotypical social responsesThemes Addressed: Improve accuracy and awareness of diagnosis of females; Improvements in the accuracy and usability of screening and diagnosis tools
Leslie Hollis	I believe that we need more resources for diagnosis once a child has been identified by early screening. Requiring a formal developmental screening tool for well check ups for all children covered under medicaid may help in capturing children whose parents have not identified a concern yet. Themes Addressed: Need to strengthen link between initial diagnosis and access to services and interventions; Universal screening for ASD is needed
Anonymous	The highest priority in this area should be diagnosis and screening tools, as well as early signs. There simply is not enough education about autism and signs and symptoms. Families do not know what to look for. Pediatricians do not refer families to early intervention nearly enough. Many do not use screening tools for autism and parent report is often skewed as the general public's understanding of developmental milestones and early signs of autism is not adequate. All of these components delay diagnosis and services to individuals.Themes Addressed: Better understanding of early signs and symptoms; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce Improvements in the accuracy and usability of screening and diagnosis tools
Kristine Croto	Disparities and diagnosis are by far the most important element to address. Autism is perceived by many as a disease that white boys get. We need to increase the understanding among both parents and health care professionals that girls and children of color are just as likely as affluent white boys to be autistic. We need to make sure that early intervention is even possible in low income communities and communities with a high percentage of minority population so that children can be identified. Screening tools must be examined to look for evidence of racial or gender bias. We need to make sure that there are age appropriate tools available for all children. There are 0-3 tools and school aged tools, but not much for 3-6. Themes Addressed: Need to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines; Improve accuracy and awareness of diagnosis of females; Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	A specific child may or may not have sensory issues, may or may not have intellectual disability, may or may not have medical issues aside from autism, and so on. An under-explored issue is the fact that autism is often inherited, and one or both parents may be autistic or nearly so themselves. Knowing this could be very helpful for parents and children alike. How do parents who realize they are also autistic usually arrive at that conclusion? How has it helped or hurt them to be aware of their own autistic traits? What can clinicians do to identify and help parents who may also be autistic? Themes Addressed: Improve accuracy and awareness of diagnosis of females; Need to strengthen link between initial diagnosis and access to services and interventions; Better recognition and diagnosis of subgroups
Andrea Gilkison, Autism Society of Indiana	I feel that there is a gap in understanding what the markers and early signs for ASD may be in early childhood. That lack of understanding can be seen in medical personal to parents to day care providers. Themes Addressed: Parents and caregivers need greater education so that they can recognize signs and symptoms; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Diane Frillman	Early biochemical testing a must. Please make it a part of the (free paid) Medicaid plan so parents can have the tests done without a financial burden. Currently, the Medicaid department and Federal government will NOT pay for these very important tests BECAUSE the results vary!! Of course they are going to vary, the treatments will vary, and the results will vary, however, children with autism will NEVER fall into the "Scientific Method" protocol. You will very rarely get the exact same results/reaction in multiple people, however, the biochemical tests are crucial to detoxifying the body before the heavy metals can destroy their brain. Brain development is crucial from birth to age 3. Children of that age should not be forced to have multiple vaccines that contain poison (mercury). You do NOT have to be a doctor to know that mercury is poison. Force the manufacturers/pharmaceutical companies to use a different preservative that will not injure a child's brain. Oh, yes, one more thing. If there is ANY way the federal government can provide, for a modest fee, genetic testing for parents who want to start a family, it could save years of grief for the potential parents. Many people are simply not educated in the seriousness of pre-dispositions and if they knew going in the likely hood of having a child with Autism they may consider adoption.Themes Addressed: Need to increase/decrease early screening and diagnosis of ASD in children; Need more and increased access to genetic screening; Parents and caregivers need greater education so that they can recognize signs and symptoms
Jen Meyers	The biggest hurdle I have faced in my son's autism journey was just getting him diagnosed. I expressed my concerns initially to his pediatrician, who told me to get him tested. My son was almost 3 at that time. I started calling doctors who could provide the screening and testing he needed...only to be told by every single one of them that there was a 9-12 month waiting list for an appointment. Imagine he had cancer symptoms and we were told to wait a year to even get diagnosed - that would be completely unacceptable. But in the autism world, this is completely commonplace. I expanded my search further and further away from my home until I found a doctor 2 hours away who could see him in a couple weeks. He was diagnosed with autism less than a month later and we were able to start therapies and interventions immediately - and 2 years later, he's about to start mainstream kindergarten. The shortage of doctors who can diagnose autism is an urgent issue that needs to be solved so that children can get access to the services they need during the most crucial time in their brain development.Themes Addressed: Need to reduce the time to diagnosis by improving service access and diagnostic tools/processWorkforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Diagnosis and screening tools Identification of subgroupsThemes Addressed: Improvements in the accuracy and usability of screening and diagnosis toolsBetter recognition and diagnosis of subgroups
Jennifer Wade	Early signs. With our three kids on the spectrum, we brought up concerns multiple times from 12-18 months onward and two different doctors pushed us to "wait and see", which caused my oldest to miss the window of opportunity for early interventions, because concerns weren't taken seriously until school age.Themes Addressed: Better understanding of early signs and symptomsPractitioners need to listen to and consider parent concerns about early signs and symptoms
Nicole Miller	Symptoms, biomarkers, disparity all have big gaps. Early signs, screening have been goal areas in the past and seem to have more resources.Themes Addressed: Need greater research and identification of biomarkers, and use of these biomarkers in screening and diagnosisNeed to address the multifaceted disparities in diagnosis across racial, cultural, socioeconomic, and regional lines
Anonymous	It is important to identify sex differences and co-occurring conditions in individuals with autism through research to help identify presentation and manifestations of the symptoms of ASD and help to inform trainings for professionals and community members who may interact with individuals with ASD. Additional research and policy would help to draw attention to the presentation of autism in females to prevent misdiagnosis and underdiagnosis. Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Megan	Genetic screening not being fully covered. Genetic testing may reveal an underlying syndrome adding to or exacerbating behaviors. Most families cannot afford to have this testing performed at an out of pocket expense. Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Veronica	I believe there are many adults with mental illness who also have ASD that has not been diagnosed. No psychologist or psychiatrist I have been to has ruled out ASD - subject never came up with them, especially if you are verbal. When I asked to be tested, I was referred to another doctor who wants to charge $1,500 for psychological testing I can not afford. How many else are going without needed services and supports in a similar situation. I hope if Hillary Clinton is elected President, that her Autism Action Plan to find the "missing adults" works (is affordable). Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	Genetic risk screening ( I carry CF gene and had prenatal screening and testing). Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Anonymous	I do not believe you can screen for ASD. Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce
Gina Pepchinski	There has to be better identification of the subgroups of people with diagnoses of autism before there can be an understanding of what interventions might work for any individual.Themes Addressed: Improve accuracy and awareness of diagnosis of females; Workforce development, including access to qualified practitioners and improvements in the training of the existing workforce

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