| Anonymous |
There is a lack of research examining the harmful effects of Applied Behavioral Analysis and other ""interventions,"" that fail to provide any long term benefits. Pharmacology is overused and abused upon Autistic individuals. More money should be invested into AAC (Alternative Augmentative Communication) devices, the teaching of Braille, ASL, Morse code, etc. Education needs to be restructured to stop traumatizing children with restraints, seclusion, electroshock, chemical torture, etc. NOT Aba! Themes Addressed: Communication, Reduce Negative Effects |
| Lisa Wiederlight |
I love the complementary/integrative interventions that may help with behaviors. If you are nonverbal and in pain, how can you tell someone? If that pain is relieved, many times the behaviors go away. Look at GI issues and how they affect behavior. What supports are available for caregivers? How do you get this research into the hands of those who need it? Themes Addressed: Behavioral Approaches, Lifespan |
| Jossette Bailey, UNC Chapel Hill |
Educational - during a teacher training program to teach in the largest public school system in my state I was made to do part of an ASD screening test to ""see what it's like,"" which has nothing to do with the educational system or how kids learn as students etc. School systems need to have better training on autism, ADHD, and neurodiversity in general. / Behavioral - I think trying to prevent kids from moving/stimming etc and to make eye contact and make conversaion just to seem more polite and fit in is not great. Behavioral health practitioners and ABA folks (which apparently don't always even need training?) should be responding to autistic people and their parents in a way that helps the autistic person and the parents recognize WHY the autistic person needs to stim, needs to move, needs to avoid certain sensations, doesn't like conversation, etc, and to work with them on how to respond to their needs on their own/with parental support (not suppression) etc. More autistic people should be involved in all of these areas Themes Addressed: Behavioral Approaches, Education, Inclusion |
| Anonymous |
I would like to see more research into autistic inertia and monotropism. I see autistic inertia and monotropism as two sides of the same coin, and they are both relatively new concepts to me. The inertia is the side that I find somewhat disabling. I have a lot of trouble transitioning between tasks, which hinders productivity and causes me a lot of shame. Monotropism seems to fuel hyper-focus, which can be a real asset. I've benefited from this when writing essays late at night, working on a tedious/repetitive work task, and even when performing in concert/jazz/marching band or working on independent art projects. It is hard for me to find the right balance of stimuli to motivate me, but when I find it, it is amazing, and I think that is so important and undervalued. So I would love to see more research toward what works and doesn't work for autistic individuals who are seeking that semi-miraculous flow state. This isn't something that has ever directly affected me, but I am very aware of the Stop the Shock movement. It strikes me as deeply dehumanizing that autistic people are legally conditioned using electric shocks, particularly if the behaviors being conditioned out are not harmful. Navigating the world as an autistic person can be overstimulating and disorienting, and things like stimming and echolalia are common coping mechanisms. Self-injurious behavior should be discouraged, yes, but electric shock to discourage self-injury is just removing autonomy from the autistic individual. I don't know. I'm not an expert, and I don't speak for all autistic people, but that's my opinion, and I appreciate the opportunity to share it. I know that autistic behaviors I exhibited as a child were gently discouraged, even before I or (presumably) my caretakers recognized them for what they were, but they served a purpose, and I think having that behavior trained out of me, even gently, negatively impacted my sense of control and self-worth. Themes Addressed: Behavioral Approaches, Reduce Negative Effects |
| Kristen Herrett |
We need to find something better than ABA. It is too easily abusive. That being said, we need to focus on services in the community for teens and adults. In particular those who are not seen as “high functioning.” Themes Addressed: Reduce Negative Effects, Lifespan |
| Catherine Martell, autistic, health care provider |
educational and tech-based communications Themes Addressed: Communication, Education |
| Anonymous |
Stop trying to change us. We are fine the way we are. We need understanding, acceptance and appreciation. Although I think it's wonderful to give children communication tools, education accommodations and skill building. This is but a drop in an ocean compared to what you could achieve if you, say, educated the relevant institution (e.g., school, or workplace) about autistic people. Simple things like not having installed fluorescent lights, being able to work in silence, or working from home even, would do wonders. Themes Addressed: Acceptance, Communication |
| Michelle Williams |
Behavioral and medical Themes Addressed: Behavioral Approaches, Medical |
| Raliat M. Bello |
Behavioral therapy and medication therapy. Each child/case is different. Themes Addressed: Behavioral Approaches, Medical |
| Parent |
Providing treatment options to parents that are irrespective of income. Encouraging schools to provide comprehensive treatment and perhaps alternative learning opportunities, ABA therapy, etc. Rather than 45 minutes every 2 weeks or so of assisting supplemental treatments. Don't that these children as if they have a mental disorder just because they are not neurological. Themes Addressed: Accessibility, Education |
| Erin, Parent |
We need more research based interventions other than ABA, which does not work for some autistics, and can be abusive and cause distress. We need multiple types of interventions to choose from that focus on support and quality of life, and they need to be fully covered by health insurance. Themes Addressed: Accessibility, Reduce Negative Effects |
| Melissa Drake, Mother of two sons with autism |
More hospitals and RTF’s for our severe kids that when in any crisis situation whether it be one hour one year or ten years there is somewhere that can help with behaviors and treat, give meds, respite, and a safe place for your child who needs 24/7 care WITHOUT having to give up your rights as his parent. Having a universal supply of therapists that are automatically covered for each ASD child/adult. Stop spending money on things that don’t help now and giving billions to corporations and invest in the children and parents/caregivers that know what the child needs or doesn’t and don’t leave them on their own to navigate. IT SHOULD NOT BE A TRAUMATIC EXPERIENCE FOR CAREGIVER OR CHILD. Which it most certainly is. REMEMBER PARENTS OF KIDS WITH AUTISM HAVE CHRONIC LEVELS OF PTSD THAT OF SOLDIERS IN COMBAT. Themes Addressed: Accessibility, Inclusion |
| Peggy Wargelin, Parent with 18-year-old child with Asperger's diagnosis |
Removing the IQ limit to receive services was a game-changer for us, and has made it so that my child will almost certainly be able to live independently. We are using transitional funding to pay for social skills training, enrolled with American Training in order to teach her life skills like cleaning, are going to get job placement help, and is working with a LifeMAP coach to help get ready to handle college. I know traditionally autism services have focused on those with cognitive issues, but the kids who are dealing with social skills, anxiety, and so forth can often make it into independent living and support themselves if they can get the transition services they need. Themes Addressed: Inclusion, Lifespan |
| Jane Kontoff |
Behavioral (especially adults) and integrative interventions (non medical). Themes Addressed: Behavioral Approaches, Complementary Approaches, Lifespan |
| Laurie George |
The public school system is failing our autistic students. Districts do not hire BCBA's, they don't train teachers, and they group autistic students with any and all other types of developmental disabilities. We have students with a 140 and higher IQ sitting in a classroom learning to wash their hands alongside a child with an intellectual disability and it makes NO sense. Non verbal autistics need access to tech based communication as soon as possible, and all autistics need access to speech therapy, occupational therapy, and behavior focused therapies. Themes Addressed: Behavioral Approaches, Communication, Education |
| Vanessa parrott |
The biggest gaps currently would be in behavioral, medical/pharmacologic Themes Addressed: Behavioral Approaches, Medical |
| Cyndi Kirby |
There are huge gaps. First off ABA does almost nothing at best and at worst is abusive. Support at diagnosis is basically get aba and talk to autism speaks who in our experience do nothing but have a website or refer to other organizations that don't specialize in Autistic matters. In Illinois there is no respite care because the wait times are decades long. We are lucky to have good health insurance to cover an AAC device which should be available to all autistics since it's a extremely helpful device allowing communication for non verbal individuals. Strong speech therapy programs and occupational therapy are important but at this point usually private so very expensive or with the school district. There needs to be more support for parents. More education of society in general of what autism is. Themes Addressed: Accessibility, Communication, Reduce Negative Effects |
| Jessica Easton |
Adult autistics need more training and access to AAC then they have previously been offered Themes Addressed: Communication, Lifespan |
| Liz |
More focus on community support and acceptance would be very useful. More resources in improving life skills, social skills and other life necessities, especially in adulthood, are needed. Most resources available are for kids - but autism does not disappear in adulthood. Themes Addressed: Complementary Approaches, Lifespan |
| Anna |
Better access to AAC devices and other assistive technology for disabled people, better insurance coverage for a broader variety or services outside of applied behavioral analysis, and an overhaul in the education system when it comes to autism topics. I've seen too many curricula outdated leaving clinicians to learn the basics about the community only after graduation, I'd like to see an end to that. It shouldn't be up to me as an undergraduate student to educate everyone including my professors in some cases on the basics. Behaviorism is very unpopular in the community, there needs to be a higher standard than RBTs providing services with scarcely more than a high school diploma. Themes Addressed: Accessibility, Communication, Education |
| Lisa Schott, parent and caregiver |
Interventions such as AFFORDABLE healthcare that covers intensive ABA therapies, parent education, certified/trained caregivers to give parents a break, student support groups, strong technology-based communications and other interventions. Themes Addressed: Accessibility, Behavioral Approaches, Communication |
| Brandi Timmons |
One of the biggest gaps in services is for social skills training. ABA services are available for those who are high support need, but there is a gross lack of services for those who are ""high functioning."" There are very few standardized programs. There are no guidelines for teachers and therapists around what and how to teach social skills. Social skills training should be covered by insurance across the lifespan. More research needs to be done around social skills training. What is effective? How should social skills be taught? How much intervention should an individual receive? There are not even structured social skills programs provided in schools. Schools do not do a good job of providing social skills training because there are no regulations or guidelines. Themes Addressed: Behavioral Approaches, Education |
| Angel Holladay |
Behavioral and educational topics are the most important to my family (12 yr old male with autism). Themes Addressed: Behavioral Approaches, Education |
| Parent of Autistic Adult |
More access to counseling psychologists and psychiatrists, particularly those available to adults. Local access to physical therapy and work-skills. Themes Addressed: Accessibility, Lifespan |
| Anonymous |
Behavioral therapy is lacking in my experience. I have noticed in other school districts all helpful therapies are pathetically insufficient and difficult to obtain. Themes Addressed: Behavioral Approaches, Education |
| Michael |
In my opinion the most important priorities and gaps in research are behavioral, educational, technology-based communications, and complementary/integrative interventions. Themes Addressed: Behavioral Approaches, Communication, Complementary Approaches, Education |
| Savannah W., Late in life, diagnosed autistic, woman, wife and mother. |
Step 1: Better models of identifying all presentations of autism, including those who have learned “masking” and “camouflaging” behaviors out of necessity. Step 2: Radically change the medical system by properly updating and educating “specialists” and diagnosticians. This also includes making the intake process more accessible through not only insurance, but also out of pocket costs, and decreasing the time spent on waiting lists. Step 3: Offer more (positive) support and direction for newly diagnosed autistic people, their parents and their families. This means knowing the right therapies to offer (NOT ABA), helping them find community and support, and overall changing the narrative that autism is something we must mourn over. Step 4: Augment the funding and support available for autistic individuals and their families. This includes autistic supported therapies, funding for grade school classrooms, alternative learning opportunities, the utilization of AAC devices, updated training for those most frequently in contact with autistic individuals, career strategizing and planning, pursuit of further education, career training and involvement, doctors specializing in autistic care, assistance during life’s major transitions, independent living 101 classes, lowered medical costs for co-occurring conditions, support team during pregnancy and and postpartum seasons, groups for similar interests, groups including all representations of the autistic individual. Themes Addressed: Accessibility, Inclusion |
| Katlyn |
Trying to treat autism with a medical model is inherently wrong in my opinion. Many autistic children are pumped with antipsychotics with supposed “decrease in symptoms” but REALLY they are just messing up these poor kids brains in the long wrong by sedating them so that theyre easier to “deal with” by the people around them. AAC/alternative communication systems are a really amazing and helpful tool and should be used more even for partially verbal to fully verbal autistic people, because sometimes speaking is very draining and forcing yourself to talk when you arent in a place to sucks. Having AAC accessible and being accepting of it is important. Also, in terms of “treatment”-> social emotional models and emotional regulation! Stop teaching autistic people to hide or ignore their emotions and sensory sensitivities (which is abusive) and instead help them figure out how to be comfortable, how to stim, and how to regulate! Themes Addressed: Acceptance, Communication, Reduce Negative Effects |
| Michelle Hecht, Private Practice |
There are significant gaps in psychological support services for persons with autism, especially for teenagers and young adults. Many persons with autism need therapists who understand how to interact with autistics. Persons with autism are at high risk for anxiety and depression, due to the impacts of their symptoms (social communication challenges, restrictive interests and repetitive behaviors). There are few therapists who are trained to work with people with ASD. Themes Addressed: Accessibility, Lifespan |
| Lisbeth Little |
Integrative interventions, educational interventions to both caregiver and child, mental health support for both caregiver and child are absolutely critical. No amount of behavioral anaylysis or intervention will help if the cause is physical. Real life interventions that support the child and family, that prepare the child to be a member of society once they age out of school based services, connections with community supports- that's where the majority of funding needs to be. Themes Addressed: Complementary Approaches, Education |
| Alexandra Hernandez |
The most important service that is missing from public school and early intervention services is feeding therapy. Most ASD kids have sensory processing issues that show up in feeding, sometimes before speech delays are even noticed. Schools and EI need to provide free and extensive feeding therapy. For medical, providing better options for vitimans and other medication that ASD kids can't tolerate due to taste. Themes Addressed: Complementary Approaches, Education |
| Sherrill DeGenova |
Yes, appropriate treatments and methodologies are vital especially for very young ages following dx. Behavioral therapies and pharmacological treatments should be priorities, b/c without them to regulate behaviors, learning will not take place. I'm not sure what genetics testing/manipulation will tell us or do for those who already have autism...but there is a terrible lack of behavioral services (both behavioral techniques and meds) for those with autism, especially adults.... It's a blackhole. Themes Addressed: Behavioral Approaches, Lifespan, Medical |
| Maryse Hile, Parent of adult child with ASD who receives services |
Ways to support families in the early years with an autistic child should be emphasized over medicating the child or diluting the family structure with too many specialists and therapists. Strong partnerships with teachers should be forged to enable any child with basic ability to develop at least fundamental reading skills. Sensory integration should not be an adjunct therapy that must be pursued outside the educational setting, but should be integrated to any extent possible into the child's learning context. Themes Addressed: Complementary Approaches, Education |
| Anonymous |
(1) Treatments and supports for non-speaking individuals, (2) supports for higher education seeking individuals, (3) supporting individuals to obtain and maintain paid employment, (4) mental health treatments. Themes Addressed: Communication, Lifespan |
| Florencia Ardon |
Definitely educational, technology-based communication should be invested in--they will improve the quality of life and outcomes for autistic people. Themes Addressed: Communication, Education |
| Katherine Troyer, parent/guardian of adult with severe autism and severe intellectual disability |
Need much more research into ""medical"" interventions, esp. to help those with severe autism and severe intellectual disability. Medications, medication combinations, ECT, other forms of brain stimulation, etc. Behavioral interventions alone are rarely helpful in the long term for those with severe autism. Themes Addressed: Lifespan, Medical |
| Michele Mann, ECD Connections |
I’ve spent the past 30+ years working with the ECE population with every type of developmental delay. I’m a firm believer of professional development, augmentative communication, and entitlement of services as is stated in IDEA for Early Intervention. Time and time again, studies have proven that investing early, saves us in the future. Not to mention intervening earlier, will help promote all of the ECE population into more productive members of society. Themes Addressed: Accessibility, Behavioral Approaches, Communication |
| Wayne, Parent |
Every case is different, but the top thing is behavioral therapies and early intervention of course. The parents and schools have to work together. Schools also need to help prepare these kids for adult life by teaching ""life Skills"" programs. Many of these kids will never hold any job, but they need more life skills than job skills. As a parent, I will also say that we found good luck at age 11 with certain medication that helps a little with the ADHD side of my son's autism, but the autism itself cannot be treated with present drugs. That being said, we do need to do one major research project on a drug called Suramin. There is a presently a stage 2 trial at UC San Diego and the government needs to push that forward because it holds lots of promise for Autism. Here's the link: https://health.ucsd.edu/news/topics/Suramin-Autism/Pages/default.aspx Themes Addressed: Behavioral Approaches, Medical |
| Carol Tatom, Autism Response Team |
ABA therapy services should be an option for any family that chooses ABA. The Autism Cares Act needs to be amended because there are insurance companies still excluded ABA services. It should be illegal for any insurance company to deny or exclude ABA therapy services for any child that has a formal medial diagnosis (F84.0) of ASD. Medicaid needs to cover ABA services as well and offer realistic rates. There are close to 22,000 children in Texas right now with autism who are on Medicaid and close to 22,000 children who are not receiving any ABA support or services because Medicaid refuses to pay for it. Behavioral services are equally important as medical & pharmacologic services. Our public school teachers should also be required to take a 40-hour ASD certification course so that they can be more educated on the topic. 1 out of every 54 children in the US today have autism and that number is growing. With those numbers, almost every teacher in the US will have at least 1 student with ASD in the classroom. Understanding autism and learning how to better help a child with autism improves the service delivery from our public schools and improves the quality of education that our students receive. Themes Addressed: Accessibility, Education |
| Tonja Nolan, independent |
complementary/integrative interventions are high, followed by tech-based communications, education, and then medical/pharmalogical. behavioral is not an issue as people with all disabilities are trying to go the best they can Themes Addressed: Communication, Complementary Approaches, Education, Medical |
| Josh Compton |
Schools need more support and resources in meeting the needs of autistic students. Teachers, support staff, and aides need training in advances in behavioral learning strategies, including compensation for training and skill development. Special attention should be paid to emotional/social needs of students with autism and their peers—that is, it’s not enough for intervention to take place in a vacuum—the school community needs to be involved. More attention should be focused on nonspeaking people with autism. They and their families need more information about AAC and other tools for giving and protecting their voices in all conversations, including conversations about their needs from their perspectives. In general, we need much more public awareness of AAC. Themes Addressed: Communication, Education |
| Hana Gabrielle, Wells Fargo |
Focus on the suicide rate of autistic adults and teenagers and also educate people what autism is and how Autism Speaks marginalizes autistic people (i.e. There was a commercial from Autism Speaks that made autism sound like a disease.). People need to realize that sensory overload is a huge thing with autistic people and not posting autistic meltdowns of an autistic child on the Internet. Also, talking about autistic burnout and autistic meltdowns should be a bigger focus in autistic research. Talking about the discrepancies between non-autistic communication and autistic communication should be there. Talking about autistic folks with other forms of neurodivergence should be a thing. Talking about medical racism and sexism should be noted when diagnosing autism in women and non-white folks. Themes Addressed: Acceptance, Communication, Inclusion |
| Anonymous |
Applied Behavior Analysis is the recommended treatment of choice. Schools need much more funding in order to hire BCBAs. Training for school personnel on basic behavior intervention is desperately needed. Many children are not receiving an appropriate education due to lack of specialty schools or organizations to work with children with severe problematic behaviors. They are suspended or expelled from schools with no where to go. Look to Illinois- there are many specialty schools for kids who need more support. Themes Addressed: Accessibility, Education |
| Dani Sellmer |
The biggest issue with treatments and interventions is that it can never be a one ""size"" fits all method. ABA therapy was deemed just that yet many autistic people report it doing more harm than good. Treatment needs to be tailored to the child and no one treatment should be prioritized over others. Educational needs should also be tailored to the child and there is a huge need for access to education. Parents should not need to work 3 jobs to access education for their autistic child. Treatment and access to treatment and interventions should not be based on ""how autistic the child is"". Many with ASD are denied help due to ""not being autistic enough"". That there is ablelist discrimination. Themes Addressed: Accessibility, Education, Reduce Negative Effects |
| Anonymous |
Behavioral and pharmacological and educational interventions needs to be researched more. ABA has been helpful in our family situation, however it needs to be developmentally appropriate as well. I think medication also needs to be investigated. We need to look into how tests are adminstered in the educational setting to ASD students. These tests are not always valid. Themes Addressed: Behavioral Approaches, Education, Medical |
| Anonymous |
Not just ONE service. All services provided in conjunction and consistantly. Health insurance companies must ALLOW & APPROVE behavioral and mental health therapies beyond the age of 12, beyond the age of 18. Vocational training must be increased at the educational school level along with incorporating life skills into the curriculum. Themes Addressed: Accessibility, Lifespan |
| Jan Carpenter, parent of two handicapped children |
1) Early intervention 2) Standard, proven methods taught across the states (parents currently look for the ""best districts"" and move to those cities if possible). 3) School districts rely too much on untrained, low paying ""aides"" to deal with high needs students. 4) There should be more options (some have to sue their districts to place their child in private specialized schools that are the best option for their child). 5) Parents often need help in their homes and don't know about waivers or supports and with the caregiver shortage, it compounds the problem. Themes Addressed: Accessibility, Education |
| Cheryl |
Unless you are rich and can pay for intensive therapy or alternative therapy which will cost thousands and thousands of dollars then maybe the child will have a chance. Insurance Co. cover very little for autism. Behavioral therapy one hour a week. That’s not going to help. Public schools for severely autistic children - horrible. My son came home with bruises up and done his back and finger mark bruises on his arms from staff. I also witnessed the school locking him in a chair for hours. Communication devices is a fight to get the insurance to pay for it. Took me over a year, multiple denials. I finally got one. The insurance company paid $5,000, I could of went to Best Buy and paid retail price for a IPad plus the app and case, maybe $1,000. Then you can’t request another device for 5 years. If the insurance company just went to Best Buy they could provide my non verbal son a communication device every year. Severely autistic children are not known for being gentle. I kinda need a new one every year. If the insurance companies would buy in bulk they could provide these non verbal disabled children a communication device probably for a couple hundred dollars. Why in the world did they pay $5,000. As far as what treatments will help - intensive therapy, not one hour a week. How about cord blood transfusions. Let’s get some research approved and covered by all insurance companies. That’s one of the huge hurdles, Insurance companies won’t pay for anything that will help. Themes Addressed: Accessibility, Communication, Education |
| Mollie |
EDUCATIONAL INTERVENTION FOR FAMILIES AND EDUCATORS AAC -alternative communications Integrative approaches FAMILY COACHING. NO MORE ABA! It is harmful! Themes Addressed: Communication, Complementary Approaches, Education |
| Nancy Kearney, Parent adult autistic man in Massachusetts |
Most important Behavioral Medical/Pharmacological Tech communication And Social integration(not on list) Themes Addressed: Behavioral Approaches, Communication, Medical |
| Edythe Koerber , Mother |
I believe behavioral and educational to be big needs also learning interventions suitable for the child. Themes Addressed: Behavioral Approaches, Education |
| Anonymous |
Overhaul / elimination of ABA as the most prescribed therapy in favor of neurodiversity affirming care through OT or other practitioners. Helping the autistic person learn coping strategies for existing in the world instead of ""curing"" the autism or making the autistic person appear more ""typical."" Themes Addressed: Acceptance, Reduce Negative Effects |
| Justin Pimentel |
Behavioural and educational ways of better enabling people with ASD to work, live, and learn in neurotypical environments is the most useful, while focusing on doing so in non-invasive and mutual ways is key. Themes Addressed: Behavioral Approaches, Education |
| Helen Leung |
technology-based communications, acceptance therapy, decreasing barriers to accommodations and services, education for neurotypical people about Autism and de-stigmatizing this condition Themes Addressed: Acceptance, Accessibility, Communication |
| Anonymous |
The utmost importance is what autism community identifies as needs for helping autistic individuals. Current mainstream “treatment” and “intervention” focuses too much on trying to unnecessarily suppress autistic behaviors to the point that it harms the individuals. This has been pointed out by numerous recent research projects but with the insurance industry and behavioral therapy industry holding onto their status quo, not much is being changed. Themes Addressed: Acceptance, Inclusion |
| Tosha |
ASD is mostly genetic. There isn't enough evidence to support autism is from pesticides, vaccines, or, a cruddy microbiome. It can come from brain damage, but that is only occasionally. ASD should be seen as a lifelong disability, with no attempts to treat it with a cure. However, there are definitely ways to assist the autistic person in feeling more comfortable with their existence overall. That is with benevolent therapies such a occupational therapy, speech therapy, and similar. Thereby omitting dangerous and harmful therapies such as aba. As changing behaviors doesn't improve the autistic person's wellbeing, and may conversely harm by giving trauma and ptsd. Teaching them to have a healthy relationship with food with a diet of fresh fruits and vegetables may help ease many comorbid conditions associated with autism, but not the autism itself. As well as allocating more funds to programs that promote an autistics' participation and integration into their communities. Occupational therapy and speech therapy are always good choices. Any ideas along these lines would be profusely helpful- while again- ignoring therapies such as aba that actively harm. Accompanying disability services funded by the government would help too, such as community and home based services. Simple care and good judgement would help just about anyone. If they ask for an accommodation, use common sense and make space for them. Tailored, advanced schools that strive for the academic and personal success of autistic people have been popular I hear. But autistic people know what's best for other autistic people. So that's another good consideration. Themes Addressed: Acceptance, Accessibility, Communication, Reduce Negative Effects |
| Christina Gleason |
Autistic researchers should be the only ones allowed to research treatments and interventions, as allistic researchers have been exceptionally harmful to us historically and presently. ABA is considered ""effective treatment"" by allistics, but is widely decried as abusive, traumatic, and causing lasting harm by autistic people who have been subjected to ABA ""therapy."" It is of vital importance that researchers look at the outcomes of former ABA patients, potentially a longitudinal study for future benefit, but at least a survey of autistic people now to demonstrate the lasting effects of ABA on our mental and physical health and our wellbeing. Themes Addressed: Reduce Negative Effects, Inclusion |
| Anonymous |
Greater emphasis on assisting the diagnoses individual in ways that serve them (rather than focus on changing their behaviors to serve other people around them). Greater emphasis on helping diagnosed individual understand their own symptoms and how ASD affects them and providing them with support to make their own choices about how they want to manage them. Other ways of assisting those diagnosed with ASD and their families behind ABA or other approaches that require the individual’s needs and comfort to be placed below those of the people around them — forcing the individual to change for others’ comfort. Better understanding of how schools can better support those diagnosed with ASD. Greater emphasis on allowing those who are nonverbal to communicate in other ways without being dismissed. Themes Addressed: Acceptance, Communication, Education |
| Elizabeth Axford |
Behavioral therapies are often incredibly damaging to autistic people, as they prioritize making them act neurotypical over their comfort and long-term well-being. They discourage self-stimulatory behavior that serves as a communication and self-regulation tool, which can cause further problems with mental health and emotional dysregulation down the line. They also prioritize autistic people’s oral communication over other, more comfortable nonverbal ways to communicate, despite the fact that a large portion of the autistic community will never develop the ability to speak and can still live long, happy, healthy lives without communicating orally. Interventions that do not discourage harmless self-stimulatory behaviors, which teach or encourage nonverbal methods of communication, and which enable emotional support and regulation, will be most effective in answering an autistic person’s needs. Above all else, we need to start prioritizing the autistic person’s wellbeing and mental health when approaching interventions. Therapies to prevent self-stimulatory behavior and forcing autistic people to act “more neurotypical” do not help them lead more fulfilling lives; instead, they remove a natural and vital tool for communicating and self-regulating that may contribute to further stress and mental/emotional destabilization in autistic people. The most effective interventions prioritize helping autistic people develop effective strategies for emotional regulation and executive function, provide them with and educate them on effective methods of nonverbal communication if they are non- or semiverbal, adjust their environment to cope with sensory processing, and educate them, their family, and their colleagues on how best to understand them and meet their needs. Themes Addressed: Acceptance, Reduce Negative Effects |
| Teresa Olafson |
Neuroreception and the Polyvagal Theory to distinguish and guide social disabilities before implementing policies to guide behavioral or pharmaceutical interventions. Social, medical and educational approaches should align with a holistic social model of inclusion. Remove the focus away from ABA and behaviorism. ABA is conversion theory; a training for neurodiverse individuals to conform to society's behavioral norms which causes great internalization of psychopathology and stress. Themes Addressed: Complementary Approaches, Reduce Negative Effects |
| Andrea Grover |
We need policy to prevent the use federal funding to support studies that seek to validate abusive ""treatments"" like ABA on autistic people; it is literally the equivalent of conversion therapy for gay people. Recent studies show that there are no substantive lasting benefits of ABA, and it causes substantial trauma for autistic people. There is plenty of evidence for these claims, plus ABA runs afoul of human rights principles. We need more research on AAC and sensory integration therapy. Themes Addressed: Communication, Reduce Negative Effects |
| Gary Ames, CalmFocus.com |
There are now several studies of neurofeedback that show remarkable results with ASD. It is already the most effective treatment and deserves more funding for research. Which system is best? Does Rob Coben have the best system with his multi-coherence assessment guided approach or Mark Smith with his Infra-Slow Frequency approach. BrainPaint is the venerable system I use. All of these, and other systems get greater than 80% success rates at significantly and enduringly reducing the most troubling symtoms. Yes, it takes a lot of sessions for ASD 40 or more or many more before we see an asymptote of improvement. But done well the costs can be cut and even home training is possible. I'm writing to tell you we have a wonderful answer to this tragic disorder. All biofeedback is a form of Applied Behavior Analysis. Both neurofeedback were developed from animal training. Barry Sterman discovered that Neurofeedback raised the seizure threshold it cats. ABA is the natural funding and workforce to conduct neurofeedback in schools, home, and community. 60 sessions of neurofeedback can be done for under $2000 when there is a group. It can be done at home for more. Themes Addressed: Behavioral Approaches, Medical |
| Alexis Oliver Williams |
Educational technology-based Themes Addressed: Communication, Education |
| Helen English, Children's Home of Wyoming Conference |
Some of the most important treatment is speech therapy. Whether it is a tablet that the non verbal can use to communicate their wants, needs and desires or therapy to understand the nuances of speech they don't understand. The next therapy I believe is important is behavior therapy. How to act or respond to a situation. Learn what they need to be successful, ie. let them know 5 minutes before they need to stop doing something so they can prepare to change what they are doing. Medicine is also a huge factor. It can help with the anxiety that comes with being unable to understand things and being unable to communicate their wants or needs. Themes Addressed: Behavioral Approaches, Communication, Medicine |
| Laura |
Healthcare providers do not know anything about what autism actually IS. They focus on an external perception of what autism is like and they focus on issues that concern THEM. Almost every intervention is about social issues, because that's what they care about in interactions with autistic people. They try to make us look neurotypical instead of accommodating us. Social issues aren't even the biggest concern for most of us. We have severe sensory sensitivities or disabling autistic inertia or sleep disorders, etc., we often can't manage a household or finances. Etc. If we ask for help, healthcare providers try to treat us for depression, call us noncompliant, ignore autism and say it's an anxiety disorder, send us to a social skills group... You need to listen to US and give us MATERIAL ASSISTANCE. I need someone to coordinate things like filling out healthcare forms or communicating with my landlord. I need someone to do my laundry and plan food for me. I don't need SSRIs or behavior modification. I need accommodation at work to access the ADA accommodation process at work because it is designed to be as difficult as possible, for NT people. No one cares what it's like for us. Themes Addressed: Acceptance, Inclusion |
| Allison |
The most important therapies for treating autism are speech therapy, social skills therapy, and occupational therapy. Other therapies are used as necessary. Whichever therapy is used, it should respect the autistic person's humanity and not treat them as merely a problem to be solved. Any and all treatment should be done according to the autistic person's best interest. Medications should be used with caution as there is no ""autism drug"". Themes Addressed: Acceptance, Behavioral Approaches, Communication |
| Anonymous |
Interventions that aim to promote autism acceptance and to facilitate environments that are more neurodivergent-friendly are the most important. Interventions harmful to autistic individuals such as ABA and other practices that aim to force autistics to mask their neurodivergence by 'acting' neurotypical should be banned. Themes Addressed: Acceptance, Reduce Negative Effects |
| Anonymous |
It's important to teach people with ASD how to interpret nonverbal communication and social cues, so that they can properly interact with the people around them. It's important to teach teach them how to deal with the symptoms of ASD in a non-harmful and productive way, while avoiding suppressing or masking symptoms as much as possible, because doing so can have negative effects on their quality of life and well-being. It's important to teach the people around them what it's like to live with ASD so that they can be properly accommodating. Themes Addressed: Acceptance, Communication |
| Aerienne Amadis-Noel Fey, Autistic (ASD 2) |
Please refer to actual autistic people, and this link: https://stopabasupportautistics.home.blog/2019/08/11/the-great-big-aba-opposition-resource-list/ Work WITH autists, don't try to shape them into neurotypicals for your own comfort or ease, it just makes things worse. Themes Addressed: Reduce Negative Effects, Inclusion |
| Anonymous |
Remember that behavior is communication. Focus on Speech therapy before you really dig into the behavioral component, so you can find out what the behavior means, and then go from there. Don't force a person to act ""normal"" and give them harsh punishments if they don't. Include autistics in all treatment and intervention planning as much as possible. Children (including autistic children) are naturally very curious, so let them have a bit of a say in what they want to learn. Use meditation for detention because meditation works much better. Give choices and ask the person if they want to take a break instead of saying something like ""go to timeout!"" It will work a lot better too, especially if the timeout place is a sensory room. Stimming and comfort items are very important. Give the person things to help avoid sensory overload. Teach the child or young adult the way they learn. the Please offer autism-friendly parenting classes for autistic parents, and do something about the marriage penalty and being a parent penalty for recipients of both SSI and SSDI. Even changes in those rules will improve the health and behavior of autistics. Themes Addressed: Accessibility, Behavioral Approaches, Communication |
| Sarah Zate, TTUHSC El Paso |
Access to alternative communication methods requires an enormous burden of proof of need. Reduce that burden. Elimination of restraint and seclusion is essential. Elimination of ABA and other exploitative and abusive methods as well Themes Addressed: Accessibility, Reduce Negative Effects |
| Anonymous |
Research on AAC and motor-planning based communication methods is important and should be emphasized more. Researchers should listen to Autistic ABA survivors about the trauma ABA causes and stop using it. It's harmful and ineffective. The so-called ""evidence base"" for this intervention is largely individual case studies rife with conflicts of interest, and the studies do not include looking for evidence of harm caused by ABA. ABA uses grooming techniques (e.g. ""pairing"" = ""lovebombing"") to manipulate behavior; it is abusive and disrespectful. Collaborative & Proactive Solutions is a model that may be more useful for supporting Autistic children. Stop using nonsensical medical interventions such as cord blood infusions and oxytocin nasal sprays which have no evidence of benefit for Autistic people, yet have documented harms. You cannot make an Autistic person non-Autistic, but you can support them to be as safe and autonomous as possible. AAC is a particularly important support for many Autistic people who cannot reliably communicate through oral speech, even if they can talk sometimes, yet robust AAC systems are not provided even to non-speaking Autistic children by default. Often, Autistic non-speakers receive ABA compliance training to communicate through PECS, which is not a comprehensive communication system and does not support natural language acquisition. When non-speakers are provided the time and support to develop their motor skills by spelling to communicate or have appropriate access to and modeling of symbol-based AAC, they often express far more complex thoughts than anyone thought possible. More meaningful research should be done on Rapid Prompting Method, Facilitated Communication, and Spelling to Communicate in collaboration with non-speakers who learned through these methods. Many Autistic adults were misdiagnosed with bipolar disorder or other mental health conditions in the past. What is the impact of long-term use of unsuitable psychiatric drugs in Autistic adults who were misdiagnosed? How can these adults safely discontinue these mis-prescribed medications? Stop indoctrinating allistic academics and alienating Autistic scholars with toxic ideologies like ABA. Explicitly evaluate and document harms caused by interventions and treatments. Themes Addressed: Acceptance, Communication, Reduce Negative Effects, Medical |
| Sarah Longstaff |
Suggesting that they keep an autistic child at home and avoid structured school as long as possible works out better for the child. Avoid ABA therapy at all costs. Encourage OT and Speech as long as they don't use ABA techniques. Reframe autistic characteristics as strengths, i.e., ""picky eater"" has a future in food research and marketing, taste tester, etc. Accommodations for our differences! Validation, recognition, etc. And AVOID PSEUDOSCIENCE! There is FAR too much of it preying on families of autistic people. I think one of the biggest gaps is that behaviorists, particularly ABA practitioners, have ZERO knowledge of autistic neurology. It is unethical and should be banned. Themes Addressed: Acceptance, Education, Reduce Negative Effects |
| Nicholas Elizabeth Faby |
Preventing abuse and neglect, greater access to ACC/sign language, alternatives to guardianship/conservatorship. Themes Addressed: Communication, Reduce Negative Effects |
| Autistic Self Advocacy Network |
We agree with the overall aspirational goal of Question 4, specifically funding research into services that address the needs of autistic people across our lifespans. However, several aspects of the phrasing used by Question 4 in its primary Objectives limit its usefulness in funding research that improves the lives of autistic people. For example, Question 4’s first Objective is to “develop and improve pharmacological and medical interventions to address both core symptoms and co-occurring conditions in ASD.” While we generally support the use of psychiatric medications to address co-occurring conditions in autistic people as needed, we do not support their use to treat the “core symptoms” of autism. Funding for “the development of psychosocial and naturalistic interventions” made up 45% ($25.6 million) of Question 4 funding in 2017, and 34% ($17.6 million) in 2018. ASAN generally opposes most therapeutic approaches to ""fixing"" Autism. ASAN recommends that the IACC prioritize directing the majority of Question 4 funding toward its Objective 3, which focuses on the ways in which technology can be utilized to support autistic people across the lifespan. Additionally, we encourage the IACC to prioritize research into AAC, including research on the implementation and scaling of effective approaches. We urge the IACC to reconsider its emphasis on “treating” autism as seen in questions 3 and 4, and focus more on Question 5, expanding services and support for quality of life. Themes Addressed: Acceptance, Communication |
| Christina Krasovich, Collaboration of Autism Society Affiliates in Wisconsin |
Addressing access issues that cause extensive waiting lists for current treatments is a priority. Providing family interventions and training for caregivers providing support at home would be beneficial. More mental health interventions are needed. An expansion of funding for efficacious non-traditional interventions is needed, especially those that use integrative social/emotional models and those that focus on body work, like massage, yoga, martial arts, etc. In addition to the treatments and interventions themselves, focus on criteria used to establish what is/is not efficacious is needed. Assess long term effects of treatments (ABA, prescription drugs) that have proven harmful to many autistic individuals. Create tools to address damage done via methods deemed problematic. Themes Addressed: Accessibility, Complementary Approaches, Reduce Negative Effects |
| Avery, I'm autistic |
Solely focus on AAC and other ways to improve quality of life regarding more disabling symptoms (eg sensory issues). ""Intervention"" often has the goal of making us appear non-autistic, which is complete and utter nonsense. Let autistic people be weird, as long as we're not hurting anyone. Themes Addressed: Acceptance, Communication |
| Anonymous |
Trying to cure autism or make autistic people seem more normal is eugenics and a waste of money. Co-designing new technologies with the intended consumers of those technologies is not eugenics and would help a lot of people. Behaviorism was replaced by cognitive sciences in the 1950s. Cognitive sciences have developed decades worth of really important research about how human brains work. Cognitive sciences have shown it is the exact opposite of helpful to have highly controlled, operant conditioning-based learning environments. These kinds of environments, according to researchers such as Edward Deci, make learners de-motivated. Furthermore, the Learning Sciences, which grew out of cognitive sciences, has found that all learning is situated and cultural practices (on micro/classroom and macro/community) scales have a huge impact on how people learn. Stop spending money on ABA when it's built on literally an expired foundation, and start spending money on actual modern research about how people learn. Themes Addressed: Reduce Negative Effects, Inclusion |
| Anonymous |
Technology based communication, education Themes Addressed: Communication, Education |
| Jennifer |
The treatments and interventions that will help are those provided by licensed, experienced psychologists. These are lacking at the public school level, and are not accessible for lower income families. We need public schools and private to provide parent’s with recommendations on behavioral supports both in and out of school. Themes Addressed: Accessibility, Education |
| Anonymous |
Currently Applied Behavioral Analysis therapy is not done in the public school setting. The only way for a child to get ABA therapy is for it to be paid for by their insurance. There needs to be research showing how access (or lack there of) to ABA children can help or hurt them and whether this is something that needs to be implemented in the public school setting. Themes Addressed: Accessibility, Education |
| Corrie Whitmer |
With regard to early intervention, I would like to see investigations of the impact of inappropriate/harmful early interventions. I think that the most valuable research for the autistic community right now is investigations of the harm that results from applied behavioral analysis therapy, which can be used as evidence to encourage parents and guardians to avoid that therapy. I would also like to see more research into the impact of access to robust AAC systems on quality of life for nonspeaking and semispeaking autistics. In a related topic, I think research that compares the value of robust AAC to more limited AAC systems is important as well. Nonspeaking and semispeaking autistics need access to low-cost, robust AAC systems, and access to resources that teach them how to use those systems and, if necessary, how caregivers can model their use. Themes Addressed: Accessibility, Communication, Reduce Negative Effects |
| Anonymous |
Best therapy practices, etc. And what changes will make education more accessible, make dealing w administrative stuff more accessible, how can tech/remote help Themes Addressed: Behavioral Approaches, Education |
| Beth Mortl |
I believe there are great treatments for behaviors in private practice, but not in schools. Also, if a child is sick, they cannot learn. Most important is to heal their immune systems and then they can learn like other kids. Adult transition training to live with some supports is needed. Themes Addressed: Education, Lifespan |
| Peggy Hamby, Speech Language Pathologist |
There is a significant lack of treatment options available to children and adults with the social cognitive deficits that occur with higher level ASD that are very debilitating. Because these signs much more subtle, these people are often overlooked when being considered for treatment. They appear able to be employed but quite often are lacking in the “soft skills” needed for gainful employment and meaningful interpersonal interactions. These people end up losing jobs and relationships due to their inability to understand and participate in social interactions. They often fail in college although they have the intelligence to be there. We are missing out on a vast population of wage earners who have the desire to be productive citizens but are less able to be successful due to the lack of treatment options that teach and practice skills needed. Far more professionals need to be trained in high level autism and social cognition to provide support and therapy to these individuals to allow them to be employed and in relationships. Insurance needs to cover this therapy under mental health to be able to afford it. Our focus is so much on severe autism that will need support for their whole lives and not enough is given to those who can function independently given some therapy in their adolescent and college years. Social cognitive therapy is essential for so many of these children. Support in the schools to get Speech Paths, Psychologist, Social Workers, Guidance Counselors trained in programs such as “Social Thinking” by Michelle Garcia Winner is imperative to get more students college and career ready. More college level support for these students is needed as well. This is a neglected population in favor of those with severe behavior concerns but it would be of great economic and social benefit to address the needs of this population. Themes Addressed: Behavioral Approaches, Education |
| Bek |
It is important to determine whether a person might have a communication disability as early as possible so they can be provided with robust augmentative and alternative communication (AAC) supports and services. Researchers at Pennsylvania State University are successfully introducing AAC to infants as young as 6 months, but most people aren’t given access to robust AAC until they enter school or later (if ever). Late and inadequate introduction of AAC causes a vicious cycle where students are given insufficient tools and supports and are blamed for not having the capacity to communicate using language. Children who are denied access to robust AAC are often regarded as being incapable of communicating and are segregated and denied literacy, numeracy, and other educational opportunities other students are provided. AAC and intensive communication services and supports should be introduced to those with any kind of expressive language delay or disability in the early intervention system. They should be provided with age-appropriate literacy instruction no later than their nondisabled peers. The goal should be that anyone who can benefit from AAC is proficient at using robust, language-based AAC by the time they enter kindergarten. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims. Specific emphasis must be placed on identifying the barriers, bias, and disparities that autistic people of color and their families face when attempting to obtain robust, language-based AAC. (1) Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy. When a person is provided access to (including the necessary supports to use and learn to use) robust AAC tools, the most significant barriers to education, employment, social engagement, self-determination, decision-making, and community living are reduced. (2) Very few medical providers, educators, related service providers, and direct support professionals have the skills necessary to train and support the use of AAC. (3) People who need AAC should always be respected and given choice and control over the communication tools and supports they need and use, as well as other aspects of their lives. (4) Educators and other service providers have an ethical obligation to ensure people who need AAC are always provided access to that AAC at all times of the day and night so that they can communicate as effectively and whenever they might need or want to, just like a nondisabled person. (5) People who need AAC should never be isolated, restrained, segregated, or assumed incapable of learning to communicate using language. Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy and additional research and development—driven and guided by nonspeaking people and their priorities—is desperately needed. Autistic people who need AAC should be provided it, along with the necessary education, supports, and services, as soon as possible and throughout their lives so that they can communicate anything they need or want to, whenever they need or want to. Access to robust AAC tools and supports is necessary to ensure equitable educational, employment, social engagement, self-determination, decision-making, and community living opportunities. Nonspeaking autistic people who are not yet proficient with robust, language-based AAC should never be assessed using standardized IQ-type measures, which are discriminatory and not evidence-based for people with motor disabilities who cannot speak. Inaccurate low IQ scores are routinely used to deny people access to robust AAC, creating a vicious cycle and leading to segregation and denial of educational opportunities. When someone is regarded as having a disability they do not have, that results in stereotyping, discrimination, and the wholesale usurping of their rights and liberties. Themes Addressed: Accessibility, Communication |
| Rachel Zanoni |
It is important to determine whether a person might have a communication disability as early as possible so they can be provided with robust augmentative and alternative communication (AAC) supports and services as soon as possible. Language-based AAC should be provided as soon as an infant or toddler is suspected of later developing an expressive communication disability. Researchers at Pennsylvania State University are successfully introducing AAC to infants as young as 6 months, but most people aren’t given access to robust AAC until they enter school or even later (if ever). Late and inadequate introduction of AAC causes a vicious cycle where students are given insufficient tools and supports to communicate, and then are blamed for not having the capacity to learn to communicate using language. Children who are denied access to robust AAC are often regarded as being incapable of communicating, and are segregated and denied literacy, numeracy, and other educational opportunities other students are provided. AAC and intensive communication services and supports should be introduced to those with any kind of expressive language delay or disability in the early intervention system. They should be provided with age-appropriate literacy instruction no later than their nondisabled peers. The goal should be that anyone who can benefit from AAC is proficient at using robust, language-based AAC by the time they enter kindergarten. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims. Specific emphasis must be placed on identifying the barriers, bias, and disparities that autistic people of color and their families face when attempting to obtain robust, language-based AAC. (1) Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy. When a person is provided access to (including the necessary supports to use and learn to use) robust AAC tools, the most significant barriers to education, employment, social engagement, self-determination, decision-making, and community living are reduced. (2) Very few medical providers, educators, related service providers, and direct support professionals have the skills necessary to train and support the use of AAC. (3) People who need AAC should always be respected and given choice and control over the communication tools and supports they need and use, as well as other aspects of their lives. (4) Educators and other service providers have an ethical obligation to ensure people who need AAC are always provided access to that AAC at all times of the day and night so that they can communicate as effectively and whenever they might need or want to, just like a nondisabled person. (5) People who need AAC should never be isolated, restrained, segregated, or assumed incapable of learning to communicate using language. Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy and additional research and development—driven and guided by nonspeaking people and their priorities—is desperately needed. Autistic people who need AAC should be provided it, along with the necessary education, supports, and services, as soon as possible and throughout their lives so that they can communicate anything they need or want to, whenever they need or want to. Access to robust AAC tools and supports is necessary to ensure equitable educational, employment, social engagement, self-determination, decision-making, and community living opportunities. Nonspeaking autistic people who are not yet proficient with robust, language-based AAC should never be assessed using standardized IQ-type measures, which are discriminatory and not evidence-based for people with motor disabilities who cannot speak. Inaccurate low IQ scores are routinely used to deny people access to robust AAC, creating a vicious cycle and leading to segregation and denial of educational opportunities. When someone is regarded as having a disability they do not have, that results in stereotyping, discrimination, and the wholesale usurping of their rights and liberties. Themes Addressed: Accessibility, Communication |
| Anonymous |
Early detection should not be used as a way to funnel autistic children into ABA therapy which does not take into consideration autistic children's emotional well-being or sensory needs. Occupational therapy may be helpful for understanding sensory sensitivities and accommodating them. It is important to determine whether a person might have a communication disability as early as possible so they can be provided with robust augmentative and alternative communication (AAC) supports and services as soon as possible. Language-based AAC should be provided as soon as an infant or toddler is suspected of later developing an expressive communication disability. Researchers at Pennsylvania State University are successfully introducing AAC to infants as young as 6 months, but most people aren’t given access to robust AAC until they enter school or even later (if ever). Late and inadequate introduction of AAC causes a vicious cycle where students are given insufficient tools and supports to communicate, and then are blamed for not having the capacity to learn to communicate using language. Introducing sensory supports is essential for helping autistic people. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims. Specific emphasis must be placed on identifying the barriers, bias, and disparities that autistic people of color and their families face when attempting to obtain robust, language-based AAC. Also: (1) Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy. When a person is provided access to (including the necessary supports to use and learn to use) robust AAC tools, the most significant barriers to education, employment, social engagement, self-determination, decision-making, and community living are reduced. (2) Very few medical providers, educators, related service providers, and direct support professionals have the skills necessary to train and support the use of AAC. (3) People who need AAC should always be respected and given choice and control over the communication tools and supports they need and use, as well as other aspects of their lives. (4) Educators and other service providers have an ethical obligation to ensure people who need AAC are always provided access to that AAC at all times of the day and night so that they can communicate as effectively and whenever they might need or want to, just like a nondisabled person. (5) People who need AAC should never be isolated, restrained, segregated, or assumed incapable of learning to communicate using language. Sensory supports that do NOT include exposure therapy and do not include an assumption that autistic people will habituate to stimuli. Occupational assessments that help people understand sensory support needs like headphones and sunglasses, and help understanding interoceptive signals. Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. Additional AAC research and development—driven and guided by nonspeaking people and their priorities—is desperately needed. Autistic people who need AAC should be provided it, along with the necessary education, supports, and services, as soon as possible and throughout their lives so that they can communicate anything they need or want to, whenever they need or want to. Access to robust AAC tools and supports is necessary to ensure equitable educational, employment, social engagement, self-determination, decision-making, and community living opportunities. Nonspeaking autistic people who are not yet proficient with language-based AAC should never be assessed using standardized IQ-type measures, which are discriminatory and not evidence-based for people with motor disabilities who cannot speak. Inaccurate low IQ scores are routinely used to deny people access to robust AAC, leading to segregation and denial of educational opportunities. Themes Addressed: Acceptance, Accessibility, Communication, Reduce Negative Effects |
| Anonymous |
NOT ABA or PBS Whatever the govt does, please do not fund ANY aba or pbs it is literally [redacted] child torture. The torture autistic kids simply so the kids will act better in front of adults who need to be taught to accept especially childhood difference. Children can learn to ""behave"" when they are older and should never be trained like Pavlov's dogs to ""behave"" Autistic children need public education and media that teaches them to accept and not be distressed by autistic children naturally self regulating their own brains with their own bodies which they do quite easily if you just [redacted] let them. Fund only research supported by ASAN and similar for us by us autistic self advocacy groups. This is literally a human rights issue. CHILD rights ffs. Themes Addressed: Reduce Negative Effects, Inclusion |
| Sandra McClennen |
It is important to determine whether a person might have a communication disability as early as possible so they can be provided with robust augmentative and alternative communication (AAC) supports and services as soon as possible. Language-based AAC should be provided as soon as an infant or toddler is suspected of later developing an expressive communication disability. Researchers at Pennsylvania State University are successfully introducing AAC to infants as young as 6 months, but most people aren’t given access to robust AAC until they enter school or even later (if ever). Late and inadequate introduction of AAC causes a vicious cycle where students are given insufficient tools and supports to communicate, and then are blamed for not having the capacity to learn to communicate using language. Children who are denied access to robust AAC are often regarded as being incapable of communicating, and are segregated and denied literacy, numeracy, and other educational opportunities other students are provided. AAC and intensive communication services and supports should be introduced to those with any kind of expressive language delay or disability in the early intervention system. They should be provided with age-appropriate literacy instruction no later than their nondisabled peers. The goal should be that anyone who can benefit from AAC is proficient at using robust, language-based AAC by the time they enter kindergarten. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims. Specific emphasis must be placed on identifying the barriers, bias, and disparities that autistic people of color and their families face when attempting to obtain robust, language-based AAC. (1) Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy. When a person is provided access to (including the necessary supports to use and learn to use) robust AAC tools, the most significant barriers to education, employment, social engagement, self-determination, decision-making, and community living are reduced. (2) Very few medical providers, educators, related service providers, and direct support professionals have the skills necessary to train and support the use of AAC. (3) People who need AAC should always be respected and given choice and control over the communication tools and supports they need and use, as well as other aspects of their lives. (4) Educators and other service providers have an ethical obligation to ensure people who need AAC are always provided access to that AAC at all times of the day and night so that they can communicate as effectively and whenever they might need or want to, just like a nondisabled person. (5) People who need AAC should never be isolated, restrained, segregated, or assumed incapable of learning to communicate using language. Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy and additional research and development—driven and guided by nonspeaking people and their priorities—is desperately needed. Autistic people who need AAC should be provided it, along with the necessary education, supports, and services, as soon as possible and throughout their lives so that they can communicate anything they need or want to, whenever they need or want to. Access to robust AAC tools and supports is necessary to ensure equitable educational, employment, social engagement, self-determination, decision-making, and community living opportunities. Nonspeaking autistic people who are not yet proficient with robust, language-based AAC should never be assessed using standardized IQ-type measures, which are discriminatory and not evidence-based for people with motor disabilities who cannot speak. Inaccurate low IQ scores are routinely used to deny people access to robust AAC, creating a vicious cycle and leading to segregation and denial of educational opportunities. When someone is regarded as having a disability they do not have, that results in stereotyping, discrimination, and the wholesale usurping of their rights and liberties. Themes Addressed: Accessibility, Communication |
| Anna R Myers |
Not ABA that is for sure! But in reality the types of things that would help is a more accessible society in general. Teaching allistic people that some people do not know how to read situations or emotions, that some people will be slower at things, that some people will be more overwhelmed by lights or noises and we should be accommodated for that, ect. On top of that occupational and physical therapy is always helpful! Classes to teach how to use ACC devices or ASL as communication devices would be great. Themes Addressed: Acceptance, Communication, Reduce Negative Effects |
| Anonymous |
Address the research deficiencies and conflicts of interest in ABA. Communication should be the highest research priority so that more autistic individuals can participate in this process and direct future research. This is about our lives, we all deserve to have a meaningful say in how it's studied. Themes Addressed: Communication, Reduce Negative Effects, Inclusion |
| Anonymous |
Many families are not able to pay for early, intensive interventions that really make a difference in the lives of children on the autism spectrum. ECI and public schools are not equipped to provide the therapies and services needed to truly make a difference. Insurance co-pays and deductibles and low Medicaid reimbursement rates make it impossible for many children to get the help they need. Treatment for older children and adults is almost nonexistent due to the years long waiting list for Medicaid Waivers in most states. Affordable, intensive and high quality early intervention such as ABA therapy, verbal behavior therapy, floor time therapy, speech therapy, occupational therapy and parent training are needed. If children, teens, and young adults get early, high quality, intensive interventions, then they will require less later in life. By not providing these services early, we then have adults who can't work and live on their own. Themes Addressed: Accessibility, Behavioral Approaches, Lifespan |
| Jennifer Reppond, parent of ASD teenager / doctoral student |
I believe that if ABA has been used and helped many (we did not use ABA and our son did fine), then there is validity in keeping it. Speech intervention (and group speech therapies for social understanding); Occupational Therapy; Social intervention therapies (not in a isolated setting); Peer network interventions in middle and high school (especially); Social integration therapies starting in school but also offered in the communities and in the workforce; biomedical therapies to address what is going on inside the body; AIT (audio vestibular training) is very effective for a lot of kids/adults; Education of college students studying to be teachers; education and professional development of teachers already working; we need 18-22 life skills training where the ""academic"" standard education does not interfere with helping these young adults adapt to a less structured life outside of high school but still have that feeling of a safety net whereby they are learning skills they can use in the workforce/community. There needs to be social interaction opportunities for students (not within the MHMR system); young adults with autism need help adjusting and they need help within the environment they are living. Learning skills in isolation does not equate to using the skills properly in the real world. Education for the general population would be a big help. Themes Addressed: Behavioral Approaches, Education, Lifespan, Medical |
| Anonymous |
More quality studies are needed to determine what actually works with people who are more significantly impacted by autism (non verbal, minimally verbal, aggressive etc.,) Also, the side effects of long term use of anti-psychotics must be studied. Themes Addressed: Inclusion, Medical |
| Roseann Schaaf, Thomas Jefferson University |
Important to conduct studies to extend existing evidence-based interventions to those from under represented minority groups. Interventions to address sensory features that impact quality of life for autistic persons through out the lifespan. Themes Addressed: Inclusion, Lifespan |
| Nina |
It is important to determine whether a person might have a communication disability as early as possible so they can be provided with robust augmentative and alternative communication (AAC) supports and services as soon as possible. Language-based AAC should be provided as soon as an infant or toddler is suspected of later developing an expressive communication disability. Researchers at Pennsylvania State University are successfully introducing AAC to infants as young as 6 months, but most people aren’t given access to robust AAC until they enter school or even later (if ever). Late and inadequate introduction of AAC causes a vicious cycle where students are given insufficient tools and supports to communicate, and then are blamed for not having the capacity to learn to communicate using language. Children who are denied access to robust AAC are often regarded as being incapable of communicating, and are segregated and denied literacy, numeracy, and other educational opportunities other students are provided. AAC and intensive communication services and supports should be introduced to those with any kind of expressive language delay or disability in the early intervention system. They should be provided with age-appropriate literacy instruction no later than their nondisabled peers. The goal should be that anyone who can benefit from AAC is proficient at using robust, language-based AAC by the time they enter kindergarten. The federal government must make certain that nonspeaking autistic children and adults have access to robust, language-based augmentative and alternative communication (AAC) tools and supports required for effective communication throughout their lifetimes. The Secretaries of Education and HHS and the Attorney General should develop and carry out a national strategy to achieve these aims. Specific emphasis must be placed on identifying the barriers, bias, and disparities that autistic people of color and their families face when attempting to obtain robust, language-based AAC. (1) Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy. When a person is provided access to (including the necessary supports to use and learn to use) robust AAC tools, the most significant barriers to education, employment, social engagement, self-determination, decision-making, and community living are reduced. (2) Very few medical providers, educators, related service providers, and direct support professionals have the skills necessary to train and support the use of AAC. (3) People who need AAC should always be respected and given choice and control over the communication tools and supports they need and use, as well as other aspects of their lives. (4) Educators and other service providers have an ethical obligation to ensure people who need AAC are always provided access to that AAC at all times of the day and night so that they can communicate as effectively and whenever they might need or want to, just like a nondisabled person. (5) People who need AAC should never be isolated, restrained, segregated, or assumed incapable of learning to communicate using language. You should be fighting to stop discrimination against autistics, especially nonspeaking ones. Introducing robust, language-based augmentative and alternative communication (AAC) is essential for anyone who cannot rely on speech to be heard and understood. The field of AAC is in its infancy and additional research and development—driven and guided by nonspeaking people and their priorities—is desperately needed. Autistic people who need AAC should be provided it, along with the necessary education, supports, and services, as soon as possible and throughout their lives so that they can communicate anything they need or want to, whenever they need or want to. Access to robust AAC tools and supports is necessary to ensure equitable educational, employment, social engagement, self-determination, decision-making, and community living opportunities. Nonspeaking autistic people who are not yet proficient with robust, language-based AAC should never be assessed using standardized IQ-type measures, which are discriminatory and not evidence-based for people with motor disabilities who cannot speak. Inaccurate low IQ scores are routinely used to deny people access to robust AAC, creating a vicious cycle and leading to segregation and denial of educational opportunities. When someone is regarded as having a disability they do not have, that results in stereotyping, discrimination, and the wholesale usurping of their rights and liberties. Themes Addressed: Accessibility, Communication |
| Diana Autin/Lauren Agoratus, SPAN Parent Advocacy Network/Family Voices NJ |
As stated above, early intervention is key to best outcomes. Only evidence based interventions should be used. These have included Early Start Denver Model, Pivotal Response Training, ABA (applied behavioral analysis), DIR/Floortime (Developmental, Individual Difference, Relationship Based) model, speech, occupational, and physical therapy, and NJ Medicaid is adding the following therapies: Art, Aquatic, Hippotherapy, Music, Drama, Dance, and Recreation therapy. We also caution that these interventions must be used appropriately. Too many children have been traumatized by forms of ABA which include restraints or other punitive measures. Restraints and other aversive interventions are ineffective at behavioral intervention and experienced as trauma. Themes Addressed: Behavioral Approaches, Complementary Approaches, Reduce Negative Effects |
| Lisa Jeanne Graf |
Make sure parents learn that ABA is abusive. Also share that AAC devices are an option for children who are not speaking. Too many children don’t have access to these devices because of a preference for verbal communication. Also students have difficulty with motor skills should have early access to a key board if typing is easier. I would like to see data on the results of ABA treatment in terms of mental health needs, sexual assualt (since children are told to comply) and academic success. I don't think any school districts are comparing outcomes for children who use ABA services, and those who do not. I am expecting the differences would be striking around mental health and assault outcomes. I would like to see more accessibility in online meetings where closed captioning is easy to access and see after a video is posted. Also the errors in the text are frequent and hurt communication access. So improvements is accuracy would be appreciated. Many autistics need closed captioning because of audio processing issues. Please have all hospitals that have programs for autistic individuals actually listen and believe the concerns about ABA from the autistic community. Hospitals only support the recommendations of doctors and don't share the preferences of the autistic community with parents of autistic children. I think ABA is preferred because there seems to be a preference for hierarchy and respecting elders and compliance from children. It is harder to explain why ABA is harmful. Themes Addressed: Communication, Reduce Negative Effects |
| GS, Autistic Person |
As an autistic person, I am not sure what you mean by ""help"" but I suspect that your idea of ""help"" is not one that most autistic people would recognize as being helpful. As an autistic person, I reject any ""treatments"" or ""interventions"" that force autistic people to behave as if they are not autistic. I DO support non-coercive therapies that help autistic people achieve their own goals as well as greater autonomy and self-determination over their bodies and lives. Furthermore, I believe that communication is communication, and that there are many ways to communicate, including but not limited to oral speech, sign language, AAC, etc. Also: ABOLISH ABA. Themes Addressed: Acceptance, Communication, Reduce Negative Effects |
| Korri Ward, parent, science teacher, local advocate |
In Nevada Applied Behavioral Analysis is provided only to children. Health insurance and Medicaid do not provide lifelong ABA treatment. Adults may need ABA to live in the community or succeed in college. In my local school district nonverbal children are not taught a form of communication. The underlying culture is that parents and teachers know what the person with autism wants and that if he/she had a form of communication they would be more difficult to take care. The most important gaps to me are that the schools do not teach a form of communication and that adults cannot access ABA treatment. Themes Addressed: Accessibility, Communication |
| Lindsay Shea, Drexel University |
1. Individualized early Intensive Behavioral Intervention (ABA) coupled with robust communication support and interventions to address sensory needs 2. Opportunities to engage in reciprocal interactions across settings with neurotypical peers across a wide array of settings 3. Structured education program to support unique learning needs and profile. 4. Supports for families and caregivers Themes Addressed: Behavioral Approaches, Communication |
| Anonymous |
There is a critical need for additional Applied Behavior Analysis (ABA) services, particularly services that treat the complex behavioral needs of adolescents and young adults with ASD. In the hospital environment, we are seeing increasing numbers of adolescents and young adults with ASD in the context of acute behavioral crises. Despite their families' best efforts to manage their behavioral needs in the home, both these adolescents and their family members are experiencing injuries, destroyed property, and extreme safety risks (e.g., running into the streets), among other impacts. These adolescents remain admitted in the hospital for prolonged periods of time and cycle through readmissions due to lack of community resources and placements. This could be mitigated through access to ABA services, the one evidence-based practice we know can teach individuals with ASD to communicate, complete daily living skills, engage in independent leisure skills, and learn job skills into their futures. In addition, their families can be taught how to use parenting strategies to safely support their children in the home. There is a critical need for ABA services, particularly those targeting complex behavior in adolescents and young adults with ASD, in order to address unmet needs for individuals with ASD in society. Themes Addressed: Accessibility, Behavioral Approaches |
| Alicia Munson, The Arc Minnesota |
The words “treatment” and “interventions” imply something is broken or fundamentally “wrong” with Autistic people. The terminology we use to describe Autistic traits contributes to further stigmatization, because it implies we can “fix” people who are Autistic through medical-model solutions - many of which perpetuate harm and inflict trauma. Rather than “treating” the disability diagnosis, emphasis must be on eliminating disparities, barriers, and systems of oppression that prevent Autistic individuals from living the lives they want for themselves. To best support the needs of Autistic individuals, beyond a medical model framework, the IACC must: Combat communication deprivation syndrome and honor augmentative, accessible communication (AAC) as a human right, also protected by ADA. AAC must include Sign language, spell to communicate, and other preferred, individualized augmentative, assistive devices. Audit ableist practices in existing treatments and interventions, to identify inherent ableism in therapies for which the goal is to make the individual “less Autistic”. Prioritize person-centered and self-directed supports, rather than “treatments” and “interventions” rooted in the medical model of disability. Ensure all discussions about “treatments” and “interventions” center the perspectives and lived experiences of Autistic individuals. Fund longitudinal studies on Autism “interventions” and long-term effects on Autistic adults. Themes Addressed: Acceptance, Communication, Reduce Negative Effects, Inclusion |
| George Eichhorn, ChildServe |
Significant gaps are present for those who also have severe challenging behaviors. The gap that occurs has an exponential impact as the person ages. These behaviors limit the interactions with family, school, friends and the community. There is very a lack of appropriate, evidenced-based behavioral health services for these people. Public schools often do not have the financial or professional resources to provide services to children with severe and challenging behavior. There is a lack of professionals that can provide support, such as Licensed Behavior Analysts and Psychologists. This often leads to a child receiving limited or no support (such as 1 hour a week of school) or the school contracts with residential facilities to provide the required support. Unfortunately, residential facilities (e.g., ICF/ID facilities) may not be able to appropriately support the person either. Age is a barrier to access ABA services. Most insurance plans stop funding for ABA after the age of 21. Addressing access to insurance would be beneficial. Communication can be another barrier to some children on the spectrum. Alternative & Augmentative Communication provides their method of communication and is an important part of their treatment plan. Access and funding for these devices have been made more cumbersome. This significantly impacts a child’s progress. Addressing easier access to alternative and augmentative communication devices would help treatment. Themes Addressed: Accessibility, Communication, Lifespan |
| Dr. Andy Shih, Autism Speaks |
Identification and understanding of the biology/types of ASD is imperative to developing and implementing targeted treatments. How and why treatments are successful is dependent on a number of factors which need to be elucidated. Factors such as social determinants, impact of ASD, and parent/caregiver characteristics (health, stress, abilities) are often neglected when designing and implementing an intervention. Large longitudinal phenotypic data registries that capture data as part of routine care is important for increasing diversity and better understand the “real world” implementation and impact of interventions, allowing for analysis of how these factors influence outcomes. Access remains a key barrier for many individuals and families to benefit from intervention and services. At the core, the challenge is one of implementation. Research over past decades has helped us develop effective treatment and services, but most of them are still only accessible via research or academic settings. We need to prioritize dissemination and implementation and make the process of adapting and implementing evidence-based treatment and services in different community settings more standardized and efficient. Finally, more investments are needed in community participatory research where solutions are co-developed and implemented with local stakeholders, thereby making knowledge translation and program implementation more efficient and effective. Themes Addressed: Accessibility, Inclusion |
| Jasmine Vasquez |
Applied Behavior Analysis (ABA) Therapy is the most evidenced based form of behavioral intervention and treatment for not only individuals with autism (ASD), but for many children with developmental and behavioral diagnoses. ABA Therapy can help improve social communication and learning skills as well as increase the behaviors and skills needed for children to function appropriately and learn effectively in a classroom setting. ABA is the only therapy that can address behavioral concerns that may be unique to children who are functioning much lower than their chronological age such as biting, scratching, head-banging, etc. The lack of coverage under insurance, particularly Medicaid, creates a huge barrier for many families in the state. Parent-Directed Treatment Programs and Parent Management Training programs are other evidenced based forms of intervention that utilize ABA techniques as well as positive parenting strategies to help children with developmental and behavioral diagnoses. These programs and trainings provide skills and strategies to caregivers to utilize at home as well as in public to help manage disruptive behaviors, tantrums, non-compliance, and other behaviors. While Parent Directed Treatment Programs are available throughout the state through grant funded opportunities, Parent Management Training (PMT) is essentially non-existent for families outside of the big metropolitan areas. Themes Addressed: Accessibility, Behavioral Approaches |
| Council of Autism Service Providers |
Applied behavior analysis (ABA) is a well-developed scientific discipline among the helping professions that focuses on the analysis, design, implementation, and evaluation of social and other environmental modifications to produce meaningful changes in human behavior. ABA includes the use of direct observation, measurement, and functional analysis of the relations between environment and behavior. ABA uses changes in environmental events, including antecedent stimuli and consequences, to produce practical and significant changes in behavior. These relevant environmental events are usually identified through a variety of specialized assessment methods. ABA is based on the fact that an individual’s behavior is determined by past and current environmental events in conjunction with organic variables such as their genetic endowment and physiological variables. Thus, when applied to ASD, ABA focuses on treating the problems of the disorder by altering the individual’s social and learning environments. The successful remediation of core deficits of ASD, and the development or restoration of abilities, documented in hundreds of peer-reviewed studies published over the past 50 years, has made ABA the standard of care for the treatment of ASD. Council of Autism Services Providers, (2014, 2020) Applied Behavior Analysis Treatment of Autism Spectrum Disorder: Practice Guidelines for Healthcare Funders and Managers, 2nd Edition, Wakefield, MA. Access to Applied Behavior Analysis (ABA) can dramatically improve the quality of life for people diagnosed with autism. In its Behavioral Treatment Of Autism And Other Developmental Disabilities Fact Sheet, the Behavior Analyst Certification Board states: Applied behavior analysis (ABA) is best known for its success in treating individuals with autism spectrum disorder (ASD) and other developmental disabilities (e.g., Down syndrome, intellectual disabilities). Treatment in this area is effective across an individual’s lifespan (i.e., childhood, adolescence, adulthood). In young children with developmental disabilities such as ASD, the goal of intensive, comprehensive intervention is to improve cognitive, language, social, and self-help skills. Decades of research have shown that intensive ABA treatment is the most successful approach for children with autism, and it is widely recognized by a number of sources including the U.S. Surgeon General, the American Academy of Pediatrics, and the National Institute of Mental Health. When applied to older individuals, ABA involves teaching behaviors essential to functioning effectively in the home, school, and community. ABA can also decrease severe problem behaviors that endanger health and safety, and limit educational, residential, or vocational options. https://www.bacb.com/wp-content/abafactsheet-autism-development-disability Themes Addressed: Accessibility, Behavioral Approaches |
| National Council on Severe Autism, National Council on Severe Autism |
The failure of decades of research to result in meaningful treatments for ASD has been an overwhelming disappointment for individuals and families, whose loved ones are often suffering grievously with mental dysfunction, severe functional disability, aggression, self-injury, and destruction. No stone should be left unturned in the quest for autism therapeutics. This should include: • Potential underlying medical conditions • Mainstream pharmaceuticals • Cannabis-based products • Sensory protocols • TMS • ECT, as a last resort for those whose co-occuring mental illness causes severe and dangerous behaviors Additionally, research is needed on behavioral and developmental interventions, focusing on: • Teens and adults with ASD • Individualized approaches • Objectives that are meaningful for people with severe autism such as safety, communication, and ADLs The NIH should prioritize interventions for severe autism, and insist that any study on ASD provide clear information about the functioning levels of subjects. Regarding communication, more research is needed on methods that promote independent communication such as AAC. On the other hand, unproven methods such as facilitated communication and its new variants remain un-validated by controlled testing. Dozens of studies have revealed the fraudulence of facilitated communication. We ask that research focus on methods that entail non-facilitated expression of thought. Themes Addressed: Communication, Lifespan, Medical |
| Anonymous |
There needs to be more empowering, holistic, and strength-based therapies for ASD, rather than treatment that is based solely on behavior. Starting with the premise that behavior is a form of communication, focusing purely on ""extinguishing"" behavior is not an ideal treatment. This behavioral model of therapy for autistic individuals has also been shown to be traumatizing. Instead there should be more emphasis on holistic treatments that address the person as a whole individual. Interventions that focus on communication, emotions, and relational connections should be the focus of treatment. The adult ASD community does not see autism as a disability, but rather they are neurodiverse and misunderstood. Therefore therapies that disempower individuals should not be emphasized and supported. With that in mind and given that interventions should focus on individual strengths to support communication, emotions, and relational connections, creative arts therapies should be given more emphasis and focus in the ASD community. Often therapies such as art therapy, drama therapy, and music therapy have made huge positive impacts for autistic individuals. Specifically creative arts therapies have been effective in increasing self-confidence, relational skills, emotional well-being, communication skills, and sensory regulation. With this impact, creative arts therapies should be given more emphasis and also be funded more readily for ASD. Focus more research on holistic, psychological, and neurologic approaches rather than just behavioral. Increase research in creative arts therapies and ASD. Themes Addressed: Communication, Complementary Approaches |
| Lynea Laws, Ph.D., Zeta Phi Beta Sorority, Incorporated |
A major key in treatment and intervention is to change the approach of educating in the classroom. Researchers have shown that a more effective and integrated visual teaching approach is warranted. Treatment and Education should be based on five principles - physical structure (individual’s immediate surroundings), consistent schedule, refined work system that promotes independence and written instructions, routine, and visual cues for both reminders and instruction. The services and supports needed to maximize quality of life for people on the autism spectrum are: applied behavioral analysis (ABA), social skills training, speech language therapy, and occupational therapy (OT). ABA focuses on finding the function of the behavior and replacing the unwanted behavior with alternative and more socially acceptable behaviors. Attention is given to the social and physical environment, including the prior conditions and consequences that encourage and maintain the behavior(s). Social Skills Training is a type of behavioral therapy, delivered either in individual or group format used to improve social skills in people with mental disorders or developmental disabilities. Speech language therapy addresses challenges with language and communication. There is always value added to improve verbal, nonverbal, and social communication. Speech should focus on improving spoken language, learning nonverbal skills, and communication through alternative methods such as pictures or technology. OT is designed to improve everyday skills – independent dressing, grooming, eating, fine motor skills – to allow individuals to be more independent. OT works to improve cognitive, physical, social, and motor skills through the implementation of play skills, learning strategies, and self-care. Themes Addressed: Behavioral Approaches, Communication, Complementary Approaches, Education |
| Elizabeth Duffy, MS-OTR/L, Minnesota Neurodivergent Education Advocacy and Therapy Services |
The evidence is mounting that shows that behaviorally based interventions such as PBIS, ABA, and social skills are ineffective at best and harmful at worst. The Autistic community has been saying this for many years. The evidence is clearly showing benefits for strengths based and relationship based approaches, and these strategies and supports are supported by the Autistic community. Greater funding towards these alternative supports is incredibly important to the well being of Autistic individuals. PBIS should be replaced by Ross Greene's CPS model as well, as this model is also much more effective than behavioral strategies in the schools. When we see theories like the Polyvagal theory, and evidence from neuroscience showing the value of shifting from the old and outdated behavioral interventions, funding should follow for these strategies and supports. Most of the available services are behaviorally based, such as ABA and PBIS in schools. Many people are seeking alternative options, yet higher education still does not train future professionals in strengths based and relationship based models. The majority of practicing professionals are unaware of alternative strategies as well. We need to have funding for relationship based and strengths based models, that are grounded in neuroscience, with programs aimed at education of current and future professionals. Research and programs should involve Autistic Advocates in all steps of the process. Themes Addressed: Reduce Negative Effects, Inclusion |
| Anonymous |
There also need to be alternative therapies to ABA that are available to families of young children who are diagnosed early. Many self-advocates in the autistic community have identified that ABA and it's underlying ideology are ableist and traumatizing for autistic individuals, yet it is one of the only therapies accessible/available for families, especially when Autism is detected early. More research and funding needs to go towards making other therapies, such as speech & occupational therapy, and supports, such as AAC, available to families. This process should include not just autism ""professionals"" but members of the autistic community. There need to be alternative therapies to ABA that are available to families. Many self-advocates in the autistic community have identified that ABA and it's underlying ideology are ableist and traumatizing for autistic individuals, yet it is one of the only therapies accessible/available for families. More research and funding needs to go towards making other therapies, such as speech & occupational therapy, and supports, such as AAC, available to families. The process of determining which supports would be most helpful should include not just autism ""professionals"" but members of the autistic community who have lived experience with these therapies. There needs to be less focus on treatments that make autistic individuals look less autistic, and more focus on treatments that help individuals live healthy, happy lives. Autistics should be included in the development of their treatment plans and their wants and goals should be taken into account. Too often goals for ""treatment"" are developed by professionals and family members without input from the autistic person. These goals then tend to focus on what neurotypical people think will make the autistic person ""better"", i.e. increased eye contact, less stimming. These treatment goals end up just teaching the autistic person that how they are is not ok, and they learn to mask. AAC needs to be made widely available to autistics. Themes Addressed: Acceptance, Communication, Reduce Negative Effects, Inclusion |
| Gina Stango |
So much more! Kids with autism should have access to year-round school. School breaks, vacations and in-service days are disruptive to their routines and extremely challenging for families. We need more accessible information about pharmacologic treatments for ASD and related co-occurring disorders, including what we know so far about medical marijuana, as well as common side effects of medications used for ADHD, etc. We also need more promotion of the exploration of technology-based communication and the best fits for our children. My daughter had been using the same voice output app since starting in an autism support preschool 4 years ago. She did not use the app functionally at home; her speech therapists continually insinuated that we were not trying hard enough at home. Finally, I told them that I was going to work on scheduling an AAC evaluation for my daughter. In response, they requested an evaluation by their consultant at our county IU, who confirmed that she believes that a different type of app might be more accessible and useful for my daughter. Had I not mentioned my intention to schedule an AAC evaluation (which I only learned about from another autism parent), my daughter's providers would have continued using the same app that has not translated globally for my daughter. In my opinion, this is a treatment failure. Themes Addressed: Communication, Education, Medical |
| Skylar |
Applied Behavioral Analysis is abuse, and should be outlawed. I would love to see more accommodating and accepting treatments that are led by and created by autistic adults. Themes Addressed: Reduce Negative Effects, Inclusion |
| Anonymous |
1) Assistive/ Alternative communication methods and tools 2) Supports and mitigations for sensory issues 3) Physical and/or occupational therapy for movement issues 4) Research into the challenges of/ services for autistic adults, including those related to employment, post-secondary education, sexual health, parenthood, poverty, aging, and menopause. 5) Training for clinicians, parents, caregivers and teachers to dispel harmful myths, reduce ableism, and help them learn to listen to autistic people and stop inadvertently harming us. This should be developed by and led by autistic people. Themes Addressed: Communication, Complementary Approaches, Inclusion |
| Jacqueline Ward |
There are many immerging programs now that deal with the individual in their natural states vs. forcing them to change or behave a certain way. Society is beginning to show more inclusion. Adults who identify as neuro-diverse or autistic are actually creating workplace environment reform, private education reform, and building non-profits. Researchers would do best if they listen to autistics for their needs and successes. Themes Addressed: Acceptance, Inclusion |
| Anonymous |
The wording of this question and the associated topic is problematic, as describing ""treatments"" comes with the assumption that ASD or its traits are something that should be eliminated. ""Treatments"" must be considered how they may have a long-lasting impact, such as the way that displacing certain self-regulatory activities (""stims"") can impact social and emotional development, force someone to ignore interoceptory signals, or transfer disregulation to other issues (like muscle rigidity leading to chronic myofascial pain). The benefits and continued application of any treatment should fully consider the lived experiences of autistic people (diagnosed as adults and as children). Themes Addressed: Acceptance, Inclusion |
| American Academy of Pediatrics |
It is important to note that with the DSM 5, Levels of Support are not meaningful applied across diagnostic settings. This makes it harder to outline evidence-based treatments for different phenotypes. And yet different interventions are useful for different phenotypes of ASD. The Academy believes It would be helpful if there were ways to designate the clinical phenotype or profile most likely to benefit from a given intervention: i.e., Social Thinking for children with ASD with normal cognition, Applied Behavioral Analysis (ABA) for children with severe ASD symptoms, and so on. This type of information may help clinicians help parents/caregivers develop a meaningful treatment plan that is more individualized after diagnosis. The AAP suggests emphasizing a holistic and multidisciplinary approach for treatment and interventions, including, but not limited to, speech and language therapy, occupational therapy, physical therapy, social skills groups, behavioral therapy, and parent-implemented interventions, as well as medical management and pharmacologic treatment for co-occurring conditions. By taking a broad approach and evaluating numerous treatments and interventions, there is a greater opportunity to determine which of these treatments help and which may cause stress, anxiety, or depression in individuals with ASD. In addition, the study of pharmacologic interventions for interfering behaviors needs to continue. The IACC can also support broader, community-based trials to allow for diverse populations to access potential solutions. The AAP also believes it is important to address quality and fidelity of services and measures used to determine if services were received. For example, Individual Education Plan (IEP) data and vocational rehabilitation data measures if services were documented but do not necessarily measure services received or quality of services received. Better data quality and collection can help determine which treatments and interventions best help people with ASD. Similarly, national quality metrics for the health care of people with autism spectrum disorder are needed to ensure all children are receiving expected levels of care. We know that individuals on the spectrum routinely miss standard preventative services as outlined in the AAP’s Bright Future guidelines. This increases the health disparities seen in ASD when dental, vision, immunizations and other standards of care are missed. The IACC can improve this by supporting the development of national best practice standards for individuals with ASD. This can also support additional value-based opportunities to improve reimbursement for the care and treatment of individuals with ASD who have difficulty finding a primary care clinician to serve them. In addition, the Academy also suggests that more ASD-specific interventions (e.g., ABA) need to be available through the school system. The AAP encourages improved access to after school activities for neurodiverse groups including sports teams, which provide opportunities for skill translation for such students. Themes Addressed: Complementary Approaches, Education, Reduce Negative Effects, Medical |
| Michael Walzer, The Hidden Gifts Project |
ABA seems to be the go-to treatment being used in autism by most organizations and schools. If you want a child to answer like a trained chimp or a dancing bear, then ABA is the answer. Some people swear by it. I question if the teachers and parents are won over by an autistic child who responds to questions or gives the right answers, but does a child really understand or comprehend what he or she is answering to? What the neurotypical world needs to do is come into our world. We have lived in your world. The Kaufman parents did this with their son: Raun Kaufman. They went into their son?s autistic world and started the Sonrise Program, which is now all over the world. We need to develop autism?s strengths and work on the weaknesses. Don?t like the word ?interventions.? It makes me think of the Judge Rotenberg Center, where they use aversion therapy. This is abusive and appalling. Shock treatment and abusive aversion therapy is wrong on so many levels. There is no one thing that covers autism. It?s finding the right combination of things for each person with autism. Every autistic person needs their own diagnosis and treatment ? there is so much diversity among us. Allowing what we hyperfocus on is a key element for our happiness. There?s a lack of education and acceptance in society that must be overcome. Continued research on the brain will give more answers about autism. Tapping into our abilities (strengths) like our creativity, empathy and hyper focusing on details in any area that interests us will allow us to work and live more successful and happy lives. Autistics need an environment that addresses our needs based on lighting, noise, temperature, smells, colors, which affect our senses because we have sensory issues. I suggest that all treatments and interventions should be re-evaluated and updated to separate the myths and outdated diagnoses from what is relevant in today?s autistic world. Autism?s input must be included because without our opinion, it?s worthless. Autism is finding its voice and without our perspective being taken seriously, nothing will be valid that pertains to treating autism. Themes Addressed: Acceptance, Reduce Negative Effects, Inclusion |
| Daysi Jimenez |
ABA Terapia de habla y lenguaje OT PT Clases para padres como RTI y DIR-Floortime Cambios en nutricion para aquellos chicos con problemas estomacales Translation: ABA Speech and language therapy OT PT Parenting classes like RTI and DIR-Floortime Nutrition changes for kids with stomach problems Themes Addressed: Behavioral Approaches, Communication, Complementary Approaches |
