The Golden Link - Uniting the Spectrum

Is the Neurodiversity Movement a help or a hindrance to Autistics and their families who have high needs and profound disabilities?

According to some people on twitter there is a definite divide.  Apparently an author and some organisations specialising in Autism 'Treatments' are determined to spread the message that "Severe Autism" is a medical illness which needs cured and the Neurodiversity movement is a cult of idealism.

Now they aren't wrong when it comes to a divide sometimes between parents of Autistic kids and the Autistic community.  But in my opinion this is more of a communication issue, which I think both sides need to work on.

The battle between parents of Autistic children and Autistics is often present on social media.  Autistic adults have often been raised in an ableist households where natural coping methods such as stimming are discouraged by parents who don't understand. These autistic adults are now determined that the knowledge is there to be shared -- to other Autistics, that this self expression is ok, and to parents, not to repress it.

Parents however, are often worried about their kids, comparing them to others, looking for answers.  Life can be hard, more complicated and no one can deny that.  Therapies, services, schooling often very hard to source and a constant battle to get right.  This must be harder at times when your child has more complex and profound needs. The medical model of autism is often presented by professionals who sometimes make it worse by suggesting a bleak outlook.

Therapists may have 'given up' or be targeted more towards medical help than therapy.  Sometimes even medical help is refused due to every health issue being branded as being part of "Autism".  This scary presumption leads parents even more into the medical model of autism, rather than different neurology.

Autistics online often get misinterpreted as being "high functioning" by parents as they are able to hold a discussion.  However the reader may not know that the Autistic may have had sensory overload that day, not left the house for 3 days, needs AAC to communicate, is incontinent,  can't tie their shoelaces, may need 24 hour care. However it's not the Autistic person's obligation to disclose any of that private information.

This mutual misunderstanding can be problematic.

So according to one side Autism is a disease that needs a cure and to the other  its a way of being. The skeptics of The Neurodiversity Movement often claim that proud Autistics are problematic as they are getting in the way of finding a cure.

For a proud Autistic the mention of cure talk is insulting and ableist.  Why wouldn't it be?  Everyone has the right to be proud of their identity.  Critics argue that the health difficulties of Autism are being ignored here.  But Autism doesn't always come with health issues, health issues can vary and because not every autistic person has these health issues, they are generally seen as being 'co morbid'.  The medical profession acknowledges this too, and every respectful doctor working on Autistic issues, call them "co morbid conditions".

The concern about charities working on Autism treatments isn't about the research into co morbid conditions, but the 'curitive narritive' that these organisations and charities advertise.  They  give parents false hope and push them away from acceptance and seeking useful, practical advice.

The fact is, many Autistic people simply aren't looking for a cure.  This is proven in a recent survey
Autistic Not Weird Survey /.

Note -  this was the results from non verbal Autistics, and ones with a learning difficulty (although I do accept a degree of cognitive ability would need to be present with the second question)

So is supporting The Neurodiversity Movement about ignoring medical issues that might also be present with Autism?

Of course not.  Autistic Advocates often talk about the frustrations of co morbid conditions and ask for research into healing or curing them.  Agony Autie is one advocate who often talks of her desire to be free from Ehlers Danlos syndrome.  It is a common topic in many Autistic groups.

Tania Melnyczuk is part of a team in South Africa working with medical experts on helping Autistics with problematic co morbids and writes about it in this blog imagine-money-wasted-in-autism-research

Which leads me on to the next question.  Is the Neurodiversity movement supportive towards those who are non verbal?

According to this person it isn't

So lets disprove them:

Firstly here is a host of blogs written by non verbal and "severely Autistic" advocates or their families -

Frank mentions a lot of names here -

Frank Ludwig - Low Functioning Autism

Not too trapped in my head anymore

How this non verbal man found his voice

A diary of a mom

So many who have found communication through alternative means.

Also, Check out #Istandwithnonspeakers on twitter.  A whole host of Autistic Advocates determined to help with the rights of other Autistics.

If you have been told your child has an intellectual disability, its very important to be open minded about their abilities.  They may still enjoy differing activities from the norm as an adult, and not achieve high educationally, but there are many other ways to see intelligence.

Mental aged theory is wrong and offensive.  An adult is never like a 5 year old child.  Read this blog and watch this fantastic video.  Don't dismiss their voices, due to perceived assumptions

mental age theory hurts people with intellectual disabilities/

Ivanova - mental aged theory

In some situations though we must accept that direct advocacy work must be done by the parent or carer on the individual's behalf.  This is often the type of parent who would be seeking a cure, and who is vulnerable to anti-neurodiversity activists.

 They attract a profitable business for anti vaccine propaganda, fooling parents with their false cures, ABA therapists, as the service user cannot express dislike, but also well meaning science researchers too, who focus on more on the profoundly disabled  as they fail to see a connection with other Autistic people. There is no denying life may present further challenges, however to cure the Autism would not take away the cognitive delay.

Lets look at some Autistic led organisations.   ASAN  works tirelessly for the rights of people with all disabilities.  If you look at the link here, ASAN Annual report they are fighting here for parents with learning difficulties to have the right to be a parent themselves, with support and also fighting for the right for non verbal autistics to have access to AAC.  This is an Autistic led organisation fighting for the rights and justice for all.  They are also adamantly supportive of the Neurodiversity movement.

Here is another UK based organisation giving guidelines about helping Autistics in all care settings. This is a fantastic guide.

An Independant Guide to Quality Care for Autistic People /

This was another venture run by an Autistic run charity trying to speak up for the victims of abuse in this care home, for residents with profound disabilities.   These are all organisations dedicated to the welfare of ALL Autistic people.

Neurodiversity activists are also trying to get this issues political by starting this cause LPANDmanifesto/.  Again criticised by anti neurodiversity campaigners.  Janine Booth writes a blog here about how incorrect their criticism is -
positive policies not pathologising patronisation.

The Neurodiversity Movement supports the welfare, protection and rights of ALL Autistic people.

Just imagine a world where your child growing up goes in a residential care unit, or requires support in the community which may be needed, now imagine autistic adults working with your adult child.  That unique ability to figure out why a sensory trigger might be near, when your loved one needs peace and quiet, routine, why a food might not be appropriate, how they can possibly avoid a meltdown.  Admittedly, not all Autistic adults will be able to do this, but some will, and they are essential.  Do you think this would have happened if the staff had been autistic? Autism Charity accused of hiding abuse at care home we think not.

Imagine your child's special needs school getting a visit from someone who can spot what could be upsetting or triggering to your children.  Do u think this would have happened if the staff had a proper training?  Autistic Students Abused by Teachers we think not.

Imagine having an autistic mentor helping you at home to figure out behaviour you don't understand.  Not an ABA therapist who doesn't know the Autistic experience.

That is the dream of neurodiversity, not to create a divide, but to create a connection.

Now can I let you into a little secret?  This is what many Autistics do already, helping families, helping schools, helping families, whether online or directly it is happening.  In advocacy issues too like claiming for disability allowance.  Its happening everywhere, most often voluntarily, which to be honest they should be paid for.

The Neurodiversity Movement can't take away the work load or stress which may go with having a family member very high needs.  But they can help in working towards making family life easier by having a good understanding of unknown or challenging behaviour.  They can help with barriers in an educational setting.  They can help with the core understanding of co morbid conditions and researching relief.  They can't take away the reality that your loved one may need a residential placement, or assistance in the community, but they can help ensure that any placement or service is safe and happy.  They will fight for correct, nuturing therapy for your loved one, and seek appropriate communication needs along with speech therapists and OT's.  They can help you fight for your loved ones financial needs, autonomy and human rights.

For loved ones who do understand their diagnosis they can encourage self worth, pride, company, self advocacy, and friendship.

The Neurodiversity community is on your side and don't let any salesmen tell you otherwise.  The Neurodiversity Movement is a threat to neurotypical led businesses who have profitted on Autism for years.  Lets help turn that around .πŸ™‚

It may take your head a while to get around all these concepts, and that is ok.  In the mean time, read these testimonials, and click on the links to connect with Autistic Adults .πŸ™‚

Useful links and testimonials of how Autistics have helped families

How Autistic Adults have helped me with my Family / Work and where to find them πŸ™‚

Autistic Adults are widespread on social media

The best way to find them on twitter,  is through #AskingAutistics

We have many links through facebook

Autistic Allies facebook community

All these facebook pages and groups:

Informative and supportive pages and groups on facebook

And a couple more great links:

The Thinking Person's guide to Autism Resources

The Autistic Advocate - A safe place for parents

Below is a whole list of testimonials from a variety of facebook groups by parents who have benefitted hugely from having Autistic friends and mentors who have helped change their whole perception of Autism and been a huge advantage to their family life.

I saw your post and wanted to tell you how much agony auties vlogs have helped me as a mom. I have always taken a child led approach to being a mom and me and my son have always had a very close, happy relationship. The problems arose when my son started school and wasn't met with as much understanding of his different needs and was seen as a spoilt child. I couldn't properly put into words to advocate well enough for him and it was so hard seeing him struggle and them fail to get him. Then I found agony autie and while I had been feeling so down and worrying so much about him and how hard his life would be with no one understanding him like I do, she helped me see autism in a whole new light. By lighenting my concerns for his future it helped me get strong enough mentally to better advocate for him. Also her amazingly accurate and simply put easy to follow engaging videos are the perfect things to be sending on to his school. I think videos explaining autism are a fantastic way of getting the word out and helping these kids. They are easy to share and catchy and quick to watch so can be sent on to the most reluctant of educators or family members. His school is finally listening to me and he is getting on fantastically this year and is so much happier. One thing I loved about finding autistic allies was how messed up I thought aba was and was so delighted to see all you guys shared that view so I kind of felt validated in hating it.
There is nowhere else I would turn to now other than autistics for helping me out with any questions regarding his autism.
Thank you all and especially agony autie for helping me see the beauty in autism again. I always saw his special ways as beautiful as a young child but got caught up in the system for a short while and consumed by worry for him and now you guys got me back on track
Keep fighting the good fight
I am a support staff person. Though I have a sharp instinct (due to life experience) regarding non-verbal communication as well as many other aspects of my work and those I serve, I find it invaluable to have this group to talk to.
I have often asked questions of the group that help me gain a deeper or more well-rounded perspective of the many facets of nuerodiversity. This translates into probiding better service to the people I assist as well as their families. It also helps me to educate member of the NT community in a more accurate and acceptable way.
As I read posts it truly does help me become more sensitive to the needs of others.
In addition, though assumed "NT" I have even more reason than before joining this group, to question if I truly am on the spectrum and have just slid under the radar all these years.....
If you would like anymore detail please ask....
I hope this is helpful
I’ve learned everything from autistic adults. From learning what autism really is to understanding I’m autistic to learning new ways of helping my children. - Bob
Autistic adult support groups gave me a totally different perspective vs relying on the autism parent support group. Parent support groups are pro ABA. Actual Autistic adult groups helped me realize ABA is actually harmful and it's best to let my son grow at his rate.
Agony Autie really helped me through her blog to understand what a meltdown feels like. My son was diagnosed in March he’s 12 . It was my first real insight into how he feels when he has one.  Donna
I have really valued these social media groups for allowing me opportunities to discuss autism with autistic people of all age ranges, all over the world. These individuals have provided valuable insight into the "autistic experience," which I have found helpful in so many ways. For one, when my son (who is now 5) was diagnosed a year ago, I was fed all this info and given all these bits of advice from neurotypical people who were supposedly experts in autism and who wanted to provide resources that our family could use. I was this close to using the 3-letter acronym we all know and hate to "help" my son, when I had the good fortune to come across autistic people discussing their own personal experiences and anecdotes regarding said acronymic "therapy." I told the people offering the 3-letter acronym "nooooo thank you!" and have been learning and trying to understand--and help--ever since. Many so-called "autism parents" and even medical professionals would consider me "neglectful" because of my refusal to impose this 3-letter acronym onto my son in an effort to make him "indistinguishable from neurotypical peers," but I refuse to cause harm to my children so that other people in society may feel more comfortable in their presence. Without autistic people talking to me and sharing their experiences with me, I may well have ended up going down the proverbial road to hell that is paved with good intentions. Every single day, I am grateful to these people for sharing with me, and I hope that the insight they have provided will make me a better parent and a better person.
Sorry to go on and on. :) I'm...verbose. LOL
I have learned that "bad behavior" always stems from a need that isnt being met.
I have learned that patience and unconditional love are the most valuable resources.
I have learned that EVERY child has feelings and thoughts of their own, even if they can't communicate at all to anyone else. They should never be talked about as if they aren't there just because they can't speak.
I have learned that my child has been an individual since birth. It is not my job to tell him who he should be, it's my job to help him learn to be the best version of himself.
It is not my job to make him fit in and act like everyone else. It is my job to help him learn to be a person he is proud of.
I’ve learned to be an ally who promotes the neurodiversity paradigm and advocate for my neurodivergent children and the adults working so hard to make their world better.
I’ve been taught to listen to the voices that truly know what it’s like to be autistic. I’ve learned to let my children just be and develop in their own unique ways.
Autistic adults have been my #1 source for understanding and parenting my autistic child. They have been so much more helpful than any professional or expert or therapist. I now have a better understanding of my child’s internal experience & how he may experience the world. I really don’t know where we’d be as a family without the knowledge I’ve gained from autistic people. Just thinking about it makes me teary-eyed. I am so grateful.

Sorry it’s short. Writing, or even thinking about having to write something, makes me anxious! If I had time to sit down and think, I could write a freakin novel with details of what autistic adults have helped me with.
Kelly Jo
I wrote all about it in my blog When you actually know Autistics  Jessica
“...we have different memories as autistics, we process liberties and invasions and assaults a different way, we often remember deeper, longer, and cannot let go or move on.”

I’m autistic and my whole life I had wondered why I couldn’t process the trauma inflicted on me by others. I thought I was just a broken person. Then my autistic son experienced trauma and I reached out to other autistic adults to understand what could be going through his thoughts. I read this portion of a comment from another autistic adult and I understood. I understood my son and myself.

I had spent a lifetime trying to understand why I needed to relive the trauma in my thoughts and now I was spending sleepless nights trying to understand why my son was doing it. The answer was in the insight of an autistic man traumatized by life events.

This one man helped me to help my son. It forced me to see that this would be a process that could take a lifetime. It will take patience to understand and unravel the behaviors attached to it. It will take time.

I’ve thanked this man many times for his insight but I don’t think he’ll ever truly understand what those words meant to me. They were a door for me, my son and other traumatized autistics to walk through. They were acknowledgment and acceptance.
When our son was going through the diagnosis process Facebook wasn't really a thing for groups like it is today.  But I was familiar with blogs and followed several, through the craft blogs I discovered a parenting blog written by the father of a boy a couple of years ahead of us.  My husband and I read every post he wrote and followed their journey.  As parenting blogs go, it was actually a good one, he took it down when his son reached an age where he felt uncomfortable talking about him online.
One day, someone left a comment about "ANOTHER parenting blog, why don't you listen to the autistic people themselves?"
So I hopped over to their blog and went down the rabbit hole of actually autistic blogs!  Those blogs led to Facebook and the groups I now belong to.
What I've learned is that while local parents can offer valuable information about education, benefits, clubs and activities as well as meet-ups (those meet-ups were amazing, and so supportive) there really is nothing quite like the first-hand experience from the adult autistic community who have that lived experience.
It's important that both groups work together and listen to each other.  A parent advocate can only be stronger if they have the back-up of the autistic community.  We have no way of knowing if we're doing the right thing, having an adult say "I wish my parents had done that" is invaluable and empowering.  It gives me the confidence to say "No, we won't be working on eye contact" or "AAC is the way forward".
This is one of the posts I read that really stands out in my memory and I've referenced it many times since. Meltdowns vs Tantrums
How Autistic Adults Helped Me And My Child
Our family was at breaking point. I realised that the things the “experts” were telling me to do were disconnecting me from my child. I had no idea what to do and I felt very alone and afraid for my child.
I met several fantastic Autistic adults online. They guided me, supported me and even answered my questions- which I now know would have been based on an offensive premise; yet I was offered kindness and insight in return.
I began making serious changes in my approach and my parenting style, based upon their guidance. The impact was incredible and I began to feel a reconnection with my child, which is a testament to my child’s beautiful soul and kind nature.
I began focusing on acceptance of who my child is, respecting their way of processing and experiencing the world and advocating for their needs to be met.
I met more Autistic adults and they nurtured me in my new understanding and encouraged me in my parenting.
In them, I found people who genuinely cared about the wellbeing of my child, rather than focusing on me. Everything they said was to benefit my child, which also benefited our family life once I made the necessary changes.
This was now five years ago. The support and guidance I received continues to drive my mindset and my parenting toolkit. My child is happy and enjoying their life, their relationships and their school. My relationship with my child has been repaired and it gives me so much happiness.
I don’t know where we would be without the Autistic adults I met, I don’t dare think about it, and I truly hope they know who they are and how much they helped us.

Testimonials from Professionals who disliked ABA

Danielle -

 I worked very briefly as a ABA aide. I had some idea of ABA but hadn’t really seen it “in action”. I met with the kid twice without the BCBA and had a pleasant time with him, just following his lead and enjoying fun play without demands. When the BCBA came the third day, the child had just woken up from a nap and was crying (right at the start of the 3:30 pm session; he attends school 8-3 and had been sick that week). The BCBA very seriously informed me I needed to “set a timer on this protesting behavior, this is an unacceptable behavior we are looking to extinguish.” When I commented about it being a long day for a sick and tired 5 year old, she told me to not let him “play me”. This child doesn’t speak, and one of his goals is to “tact”, or label things. After witnessing the BCBA screech “drum! Say, drum! Drum! Drum!” 10 times in his face to no response, she directed me to mark them as “incorrect” responses. When I asked “how can he answer correctly when he doesn’t speak?”, she told me “he can, he just won’t” (I observed nothing to support that). The BCBA was upset I was unwilling and unable to work 330-730 a day and when I said “when does he have time to be a kid if he’s expected to be working with teachers/therapists more than 11 hours a day?”, she said “he NEEDS this therapy, he’s very disabled.” I left the session and just never went back. The final straw was when the kid was pulling her hair and glasses (normal response to someone yelling in your face!), she said “it’s because I keep the demand on and you let it go”. Just ... wow lady, you’re an asshole! There was “parent training” during her supervision of me, and I just cringed at how she talked to the mother about the kid, as though he has some awful and incurable disease. I felt terrible for even being involved for 3 days. It was a mess and goes against everything I as a teacher  believe in.

Kaitlin Walker -

I was an ABA tech in high school,  which is absurd in and of itself. It was excruciatingly boring. I remember sitting there thinking,  I sure hope these kids learn these things by growing up because they're not learning anything from this. Now I have an autistic daughter. My experience made me avoid ABA and autistic self-advocacy blogs and videos reinforced that decision. But we've still considered it several times because there is so much pressure. Literally every time we go to the doctor we get interrogated about not doing ABA and our insurance won't cover anything else (Kaiser in the US). But I do write about why we don't do it. And as an answer to your question it would take so much personal work for parents who believed in ABA to speak against it later. If you've practiced not listening to your kid for 16 years why would you listen to and respect them now as an adult?

Courtney -

Several years ago, I used to be an ABA provider. I did both in-home early intervention, as well as in school for "moderate to severely" ASD kids. I thought I knew everything then, and that what I was doing was the only way we could teach these kids. I mean, it was evidence-based, right?

Then after having my own child, I started reading more from folks on the neurodiversity side, and it really started to change my perspective. Flash forward to my own son's diagn or subject my son to it.

I don't know if I'd describe it as cult-like, but I can see where other people may say that. It's just a system that thumps the science. There's data and if it supports what we think then that's all that matters and nothing else. If you don't have data, you have nothing. So, if you were to say "I don't think this is an effective method for _____," you better be prepared with data to support why you think that, as well as what data-supported method you propose to replace it. Having feelings about it or "projecting" feelings into the students/clients isn't acceptable. πŸ™„

My biggest issue now falls on the compliance and consent, as well as basically the entire foundation on which it's based lol. It's assumed that our children can't learn in any other way, so this is what we have to do. But it's presumed based on asking a fish to climb a tree. If our kids don't have a way to communicate or demonstrate their knowledge and intelligence, then the "data" we're gathering is inherently flawed and false.

I'd sound like a heretic amongst ABA-ers, and I'm ok with that. 😊"

Blogs from Professionals

Ann's Autism blog spot

Testimonials from Parents who Tried and then Rejected ABA for their child

Shayna -   I am an Autistic mother, of an Autistic child. I was originally not-wanting ABA, but early intervention signed us up for "parent training" I did not, at the time, know that was ABA. Once I figured that out, it was 'only' an hour a week, and I wanted to know EXACTLY what ABA was, so I didn't flat-out drop it, for about 3 months.

Learning about ABA made my skin crawl. The idea of having what was discribed done to me, or things like "it's totally humane, it's how you would train a horse or dog" that were meant to soothe me, just made me more weary.

My son immediately started having meltdowns when ABA techinques were used, and we were told those were "tantrums" and that even if we coddled him after 2 hours of crying, we would be "reinforcing" the bad behavior. After about 3 months, a little before that, my son stopped having meltdowns, and had stress tremors. I gave THAT 3 weeks, and then dropped ABA altogether. the stress tremors stopped as soon as ABA techniques were no longer used, even though we stayed with the same speech therapist, we just told her not to use ABA techniques

ROSE  -   Two of my experiences with ABA

They would set up a situation, for my son, that they knew would provoke a meltdown.  It was done so that they could  "help" him deal with the meltdown. It was meant to desensitize my son to his triggers. They called it making progress. I call it abuse.

They would also restrain him in a chair until his tasks were complete. Regardless if he understood what was being asked of him or if he needed a potty break or if he was afraid...this was of no importance to them.
ALL that counted was him doing what he was told.

It took over 3 years to undo the damage that was caused.

Shaquana -

I tried ABA for a couple of months for my son. It was a lot of training him to obey me completely and utterly. A lot of 'give him this treat but only if he does what you say'. My son was a WRECK the entire time. Anything he did learn, a big thing we were trying to do was potty training, was accompanied by a sense of ME winning, not him.

The rules were intense. The meltdowns were frequent and if they stopped at all it was out of exhaustion. He did NOT understand what was going on, only that he had to act a certain way or he wouldn't eat or play or anything. I felt like I had a drone, not a child.

It's cruel. It doesn't leave room for learning why or how to have your own thoughts and make your own decisions. I was not teaching him how to live in society, but how to shut up and not be seen. I hated it and I dropped it after a while. And he is awesome without it.

If you are trying to raise a robot, great. But when that robot gets older and is manipulated and can't understand when an adult, or any other authority figure, is out of line, that's an issue. The therapist was speechless when I asked, "Okay, if we teach him to do exactly as he's told no matter what, what happens if someone sexually assaults him? Or tries to kidnap him? Is there anything in this therapy that teaches him to say 'NO, I'm not comfortable with that' or even 'No, I don't like to do that, let's do this instead?'.

No personality. Nothing but assimilation and an assurance that you can get your kid to do 'normie' tricks and pretend to fit in better. It was disgusting. The training was NON-STOP and I was expected to continue when the therapist wasn't around.

No thanks.

Jessica -

I had one session with my kiddo very early on when she was first diagnosed.  As the neurologist who diagnosed her said ABA was the therapy she needed alongside OT. We walked out.   Continued with OT.  And i educated mysef on what ABA was which helped me to understand why i walked out of that therapy with my kiddo.

Anon -

We did about 3 months the spring/summer of 2012. I was hugely pregnant with our twins and had three boys who were 3 1/2, 2 1/2, and 13 months old.

We had services through our Regional Center and they contract through Easter Seals. We had five therapists and one supervisor within that 12 week period. The first quit after a week to move out of state. The second I asked to leave after 2 sessions because she was causing then ignoring distress. The third was our longest tenure: 2 weeks before she was reassigned (we're at 4 weeks here).
The fourth and fifth came together as a pair, a supervisor and the therapist. I actually liked these women BUT after watching them for one week (four five-hour sessions) I told them I wasn't happy with how things were going. We continued "Parent Teaching" for the remainder of the two months.

It ended up being a mommy chat time for 5 hours three times a week because we hit it off as parent friends. My biggest issues were the intentional causing of distress to elicit a "problem" behavior the therapist could then work on correcting. The ignoring of distress was also extremely against my parenting style. They also talked about my boy as being manipulative and naughty.

Our school district employed a behaviorist who has her masters in child development and CBT. I absolutely adore her and how she see children. If there's ever something going on she always looks at how it's being delivered to the child(ren) as the issue as opposed to changing their behavior. Students get to take breaks in three safe spaces upon request (either verbal, icon, or signing) and distress is never ignored or intentionally brought on for the sake of "training."


Met with BCBA once. Thought I had explained what made me uncomfortable and what I was looking for (self advocacy skills basically). The therapist proceeded to prescribe that we force my daughter to say hi, every time someone said it to her, and to hold her there until she said it. We never went back.


My daughter had one session that was awful. The therapist kept saying "I know it's hard but this is the best way."
Well. It never happened again. My daughter has never forgotten. I did some serious repenting with her more than once. It was downright traumatic.


Funny thing.. my daughter had ABA for about 20 hours a week, now that she started wanting to go to school her ABA therapist told us that this is a horrible idea and that she couldn't receive as much ABA anymore and her development would stop or even lose speech.

I put her in school, she got her headphones, her necklace for the bus and she's the happiest kid. She's doing great in school, actually she's one of the best in class.

I got told ABA is the best thing to do when my kid first got diagnosed and I didn't know anyone who could educate on this. All I say is my daughter is so much happier now then she was few months back...

Samantha -

I have two Autistic children. My oldest had ABA for about 2 years (from 2.5 to 4.5). My youngest had it for 1.5 years (from 22 months to 3). When my eldest was diagnosed, it was made clear that ABA was THE therapy to do, was scientific, evidence based, and the best way to ensure positive long term outcomes. The first company that we worked worked with was owned by a woman who actually worked under Lovaas. I asked her how I would know WHY my son was exhibiting particular behaviors. She told me that it was impossible to read his mind and it didn’t matter why he was doing things. That we were just to respond to behavior. Well, it DOES matter to me why kiddo did what he was doing at the time. There were also times that they said we would have to provoke certain distressed reactions from him in order to train the behavior out. It just seemed cruel to me to intentionally upset him (at the time, there were pretty significant SIB like head banging—I was desperate for that to stop and couldn’t imagine trying to get him to do it on purpose).

Another therapist was awful to my son, physically restraining him when he was upset and sometimes just sitting there while he hurt himself. She made a whole point about how I shouldn’t “give in” to his fits. I ultimately threw her out of my house after she threatened to call CPS literally because of the way my furniture was arranged.

Anon -

When our child was diagnosed in 2008, the narrative around autism was very, very negative. It was the height of the Autism Speaks "doom and gloom" campaigning, some of which also went on here in Australia.

My husband & I were led to believe that autism was something to be "defeated," or at least "strongly mitigated," and that with dozens of hours of therapy each week, our child could reach the ultimate goal: "to be indistinguishable from their peers" (this exact phrase was used).

In fact, on the first day of our orientation at the early intervention centre so many people recommended to us, we were shown a video clip of an American boy who apparently "recovered" from being autistic after doing years of intense behavioural intervention.

In those early days, we didn't feel empowered to challenge drills that encouraged things like eye contact. We didn't have the benefit of learning from autistic young adults and autistic adults about just how painful it is to try to "pass" as not autistic and to be encouraged to quash things like non-harmful stims. We were told that when our child was crying or resistant to doing sessions (I know appreciate how exhausting 20+ hours of therapy must have been for a tiny child) that we needed to "work through" otherwise we would just be escalating the issues.

Tabitha -

It’s so much like dog training that my kind sweet 5 year old nonverbal  son still won’t even take a bit of food without being prompted ( told it’s ok ) and we stopped almost a year ago .... he’s just so afraid to do anything he’s not suppose to , trying to get him to think for himself again is what I’ve. Been doing everyday since ! it’s heart breaking !!

Fadwa -

Yes we did ABA with my son for two years, I will regret that for ever, I should have known better since I was preparing a phd on invisible disability like ADHD, sensory disorder and austim, but the thing is ABA therapists prey on parents' fear "prepare to be fighting with an adult in shakles and diapers if you do not do this now, the window is closing, early intervention is key"" this was a response I got when trying once to reason with one of them by asking her "does not he have a say in it,." Once an SD is given there is no way for the child to refuse to comply even if it is so absurd like touch your nose. I seems happier after I fired all his ABA team.

Kim -

My child had an ABA-based program at his public school in a typical classroom, from the end of 2nd grade through half of 4th grade, when I pulled him out to homeschool. My family did not feel that we really had a choice about this intervention and I brought many of the concerns I had heard about ABA from autistic adults to our school team from the start. I was assured that this ABA program was "not strict" and was not the way ABA was done "in the 90's." This was the kinder, gentler ABA. I made sure my son was allowed to stim. I insisted that no one prompt eye contact. He was not pushed to act neurotypical. He would be taught "coping strategies" and be allowed to take breaks.

The first red flag was when our first BCBA wanted to implement a "quiet sit and be calm protocol" in response to my son bolting or having outbursts. He was supposed to sit quietly with his hands still for 30 seconds, and if he had "maladaptive behavior" before the 30 seconds were up, he would have to come back and start all over until he was compliant. It was clear to me that forcing a child to appear calm with no regard for a triggering environment or situation was abuse, and I vetoed it immediately.

The main focus of this ABA program was teaching my son "coping strategies" so that he would not run away from the classroom. In the entire time he was reinforced for requesting breaks instead of bolting, there was never an emphasis on learning WHY he was running away. When he continued to be stressed, it became clear to me that there was no way to determine whether his "coping strategies" actually helped him cope. His BCBA could only measure whether he utilized replacement behaviors and whether he was compliant. Using "coping strategies" was meaningless.

When my son started having meltdowns at school, I was initially unaware of what was going on, because his interventionists and our BCBA referred to the episodes as "noncompliance." When I asked our BCBA how she distinguished between autistic meltdowns and intentional noncompliance, she told me that ABA looked at differences "based on observable measures." The only difference between the two from her perspective was that my child typically cried and showed aggression during meltdowns but not during other instances that were considered noncompliance. There was no place in ABA for her to understand that meltdowns were an involuntary reaction to being overwhelmed, and therefore no way to treat them any differently than willful disobedience.

Despite my full-time advocacy, there was never a serious attempt to integrate an understanding of my child's internal experience into his plan. Teaching a child "coping strategies" instead of unsafe behaviors sounds great on the surface. But with a focus solely on external behavior, ABA has no tools to tell if a child actually feels safe and calm, or if they are just suppressing their fear or pain to be compliant. If a child's meltdowns are not understood as anything more than noncompliance, that child can't be supported appropriately. It was clear that my child was just being subjected to compliance training, and I pulled him out of school.


My 10 year old autistic son has been attending a district autism school. It has all the bells and whistles. It has everything you could have dreamed of. Including bikes in the hallways for the autistic children to ride up and down the halls. My 10 year old was doing so well there. Looking back there were red flags but I couldn’t put my finger on what was causing some behaviors. My 3 year old autistic son started in April. He was there for a month when my 10 year old told me what was going on because he thought he hurt his brother. Every day/twice a day they have the autistic children go to the nurse and they do body searches. My 3 year old wouldn’t comply so they brought his brother in to hold his hand and undress him. After that they used marshmallows (his favorite food) to force compliance. Every day autistic children are given reinforcers to take their clothes off. Every autistic child in the program. I found out because my 10 year old couldn’t tolerate watching his brother screech and cry. I was never notified or asked if this could be done to either boy. When I questioned I was told they didn’t need my permission. When I said that they were grooming my children for a predator, I was told that they didn’t care because it was policy. When I demanded to see the policy in writing, they said they didn’t have it in writing. When I demanded to see the daily logs that showed that there were 2 staff in the room during these searches, they didn’t have it. When I asked if they did this to “normal” children they became offended. I told them “we stopped being politically correct when you body searched my disabled children like they were carrying guns”.

If you’ve made it this far. I filed an institutional abuse report against the school. It’s still under investigation. I’ve asked for an out of district placement but the school is making me wait. I’ve asked for home instruction and I’ve been put on the back burner. I’ve implemented in home counseling to deal with any long term effects. I now have kids with lovely IEPs that are worth nothing because they aren’t in school. I continue to fight and argue with the school.

ABA techniques are used to abuse and manipulate children to comply. Compliance is abuse. Compliance causes abuse.


My son did ABA for 2 months and was traumatised, It took him 6 months to recover, and we still have a lot of harm to undo, and the worst is he doesn't trust me because I was the one taking him to therapy. He only comes to me or hugs me when I am in my pijamas, if I am dressed to go out he hates me, he gets scared I might take him somewhere he doesn't like.


When our child was identified as an Autistic person, we were overwhelmed by the negative rhetoric from the “experts” around us. It made a situation that need not be, incredibly challenging.

We didn’t know of a single other Autistic person in our family (that changed over time), and at that point we were completely raw, vulnerable and absolute rookies, so we made a rookie mistake with terrible consequences; we followed the advice of the “experts” and enrolled our child in ABA “therapy”.

Our child was only 3 years old when the ABA started. There were challenges of course, though our child was a genuinely happy and very loved child. I’d always strongly believed in connected, responsive parenting and our relationship was hugely important to me. I enjoyed being with my child immensely.

As soon as the ABA started, we began to see a change in our child. Anxiety and unhappiness became increasingly common and ultimately, meltdowns which descended into aggressive behaviours and striking out. I knew things couldn’t continue, I was losing my relationship with my child.

I didn’t know it then but this process in common when kids start ABA; we were told that it was just our child trying to avoid compliance and that aggression was a normal part of extinction outbursts. I was horrified and began insisting that I witness for myself what was happening to our child (this was strongly discouraged).

These are some of the things I saw:

Our child being physically turned to look at and speak to any adult who spoke to them (even though verbal speech had not yet developed - a noise was taken as verbalisation)

Forced and sustained eye contact

Our child being “pinned” in their seat by placing the table into a corner, with our child sitting against the wall with the “therapist” sitting at a right angle, effectively blocking the exit.

Affection, food, drink and use of toilet being refused until “compliance” was achieved.

Attempts to communicate upset, distress, frustration were all ignored.

Use of “Verbal Behaviour” techniques when our child was non-speaking: forcing our child to attempt verbal speech in order to have needs met, rather than provision of a suitable communication system, causing stress and frustration to our child. Drink, food and bathroom breaks would be refused until they were satisfied with attempts at verbalisation. Toys were also locked away or high up, so our child would have to verbalise a request for them.

Tasks were repeated so often that our child was purposely doing it incorrectly since getting it right only resulted in it being repeated again and again with various “therapists”.

Our child was discussed at length, in his presence, as if he were absent. These discussions centred on all of their perceived “deficits” and how compliance was going to be achieved.

Refusal of food until task completion or a different food was eaten first, regardless of why that food was disliked.

Over-the-top, inauthentic praising when compliance was achieved, followed by toy, treat or affection being given.

Hand over hand prompts or even full physical prompts, despite my child’s obvious discomfort.

Not being allowed to say “no”, regardless of how reasonable it was in the circumstances.

Forcing my child to undertake a task he had a very clear and very strong phobic response to, until he vomited- which was ignored and the task enforced anyway (until I stepped in and insisted this not continue, at which point I was bullied by the BCBAs and told I didn’t have my child’s best interest at heart).

Ignoring my express wishes that certain things not be undertaken with our child.

Advising me to lock my child in an empty room during any “aggressive outbursts” and refusing to give them any attention or affection following it.

Our child was removed from the programme after a few months and unfortunately, PTSD has become an issue for both my child AND for me. Thankfully, our relationship has been restored and I parent with love, acceptance and respect at all times. I demand the same from anyone who is working with or supporting them. Our child says no now but it took a long time for this to be something that was comfortable for them.

This ABA took place in the last 5 years and at a place where new “therapists” are trained. They are all BCBA certified.

Once we left ABA, we engaged an SLP who was appropriately qualified and refused to use ABA techniques. They identified that our child has an Auditory Processing Disorder, which helped to inform the best ways of supporting the development of communication, speech and language. Even though verbal speech was not a specifie
d goal of that work, within 6 months our child naturally developed verbal speech.

Kelly Ogden

I am the parent of an autistic son. I am NT. I knew nothing about ABA but as soon as my son was diagnosed everyone said ABA was it. I did some research, but was on board because everyone else told me to be. That was a hard lesson for me. My gut started red flagging week one. It ultimately resulted in my ending ABA. Then I joined this group and started reading testimonies of people that have gone through it. It was exactly what my gut was screaming before I had knowledge. DONE. NEVER AGAIN. REPULSIVE. For me and my son anyway. I also let tho owner of the company how I felt. We never spoke again. Imagine that.

Allison Hubbord

We never technically did ABA but I pulled my child from speech therapy where the same approach was used, which in retrospect isn't surprising because it was from Easter seals and they were also the ones who were supposed to do the ABA therapy which we declined to pursue after originally being referred and started the process but never had actual therapy take place, we were still in the intake process and had met in home with one of the providers, and it was his lack of being able to even explain what ABA was or what its goals were that led me to explore it on my own and the information I found was what made the decision for us to not let the ABA proceed. The speech therapy, we actually saw the abuse take place so we told her from it afterwards.

Testimonials from Autistic Adults who were put through ABA

Elinor -

It is worth looking up the 1965 Life Magazine article on ABA when it was conceived to understand the pedigree - just knowing the basic underlying principle and how they started using electric shock as punishment (and still do in some in-patient settings) speaks volumes. Those obviously abusive interventions have been replaced with "withdrawal of interaction" - basically social rejection, which I would argue is exploiting a deep vulnerability. When I was treated with ABA, this method was used, and frankly I would rather be shocked.

The goal of ABA is to bring about the extinction of "unwanted behaviors" (unwanted by allistics), since autism continues to be diagnosed based on behavior, not experience. There is no care taken to address the fact that the behaviors are natural to autistics and are how we regulate our sensory overload and nervous systems etc. So regardless the form of punishment used, the goal is tomake allistics feel more comfortable with autists at the expense of the autist feeling pain and stress.

The outcome is reinforced in the world at large, because it is socially acceptable to shun autists who behave autistic, and so if ABA is "successful", the autist is placed on a life path of trying to pass as neurotypical mask natural behaviors and mimic allistic behaviors that are neither natural nor innately comprehensible.

What never gets addressed is the enormous cost of passing. Using skinnerian conditioning to train autists (like dogs) to mimic unnatural behavior means that they are taught that they must show up and interact with others by pretending to be someone else. We are taught to fear that someone will see who we really are if we don't manage long lists of rules for interactions. This increases the anxiety of social interaction while simultaneously rendering it inauthentic. It deepens shame in who you are, whether you are successful at passing or not.

While I was passing, I left every social encounter and cried in the car afterwards and thought about suicide because I didn't know if I had seemed "normal", I didn't know if people really liked me because they certainly didn't know who I was, and because I felt like a monster inside. You cannot have healthy self-esteem this way.


Stephanie -

Let me go ahead and make one thing very clear and specific. I know there are thousands of variations therapies that are called ABA. Not all of them are exactly like what we went through. I do believe that a lot of our fighting in the autism community between parents and autistic adults comes from the miscommunication that all ABA therapy is exactly the same. That's just not the case anymore in this day and age. ABA still has its original Standard principles behind it. It's principles are to make the autistic person look and act as allistic or normal as possible in society. This is no more than dog training to become the world's greatest actor to be somebody that you're not. That is still the basis of ABA. If your child is undergoing variations or modified from ABA type therapies then those are probably not quite as damaging as what me and Kath have been through. But all in all ABA is more for the parents then it is for the child. Why would you send your autistic Child to her therapy to teach them a life skill that you would patiently teach your allistic child at home? That really doesn't make much sense to me other than the fact that some parents justcannot find enough patience to teach that life skill. Now that does not mean that parents are not patient that means that it requires even more than what some people are able to give in order to care for the autistic person. It takes a great deal of patience. Even more so than what you think it would. I'm raising two children on the spectrum. I'm on the spectrum as well. My patience wears thin quicker than a lot of people. I'm constantly having to remind myself be patient they learn differently. I focus on their Strengths. I discipline bad behavior. I reward effort I reward good behavior. And I don't reward with treats I give verbal praise and high-fives. It's Constant patience. It's about stepping into their world and learning from them before you teach them anything. So some of us laugh when we're mad and some of us cry when we're happy. Just because more people in the world don't use their emotions like that does not mean that we are broken. We have feelings. We have empathy. We have passion. We are loving. We are compassionate to others. And just as we are all of those things, we can be assholes, jerks, ignorant, rude, abusive, and just all-around angry. But those have nothing to do with our autism and everything to do with what is in our personality. Her personality and her autism have nothing to do with each other. Just like my intelligence has nothing to do with my autism. I'm not smart because I'm artistic I'm smart because I'm smart. And between me and my brother he's the smartest out of both of us. He's also Allistic. But you have to remember that some therapies are really good I can help with the general basis of ABA is very detrimental to a person's mental state. I have friends here in Alabama in my hometown even that live in an assisted living home at 30 years old because they can't cope with the PTSD caused from ABA. Yes they are very independent people that their PTSD messes with them so badly that they can't function well enough to be trusted alone. It defeated the entire purpose of what their parents were trying to achieve with ABA therapy. And that's what so many autistic adults are trying to tell parents. Compliance training in general can be very very unhealthy for any child with any kind of developmental disabilities or struggles. I also understand there are people here who have children that are very low on the spectrum. Just because you're labeled low does not mean that that person does not possess the The ability to learn how to be independent it just takes more time. Most autistic adults end up in homes because when they turn 18 all of the therapies stop people quit trying to put in as much effort to help and they're rarely any places that have support systems for autistic adults. It's like as soon as we hit 18 or 21 or thrown away to the sidelines and left with no help. That's why everybody claims that autism is such a tragedy. We tried to getting to talk for 18 years and it didn't work so we gave up. When it may have only taken two more years to actually get that person to save their very first words. Does anybody understand what I'm saying??? People give up way too soon and label was a lost cause when we could be so close to reaching that goal."

Personal Testimonies from other sources

Thomas's Story

ABA and my experience with it

Attention Autism Parent bloggers ❤❤❤

Write, Stop, Think

Would you write that about their siblings?

Would you have liked your parents to write that about you?

Is you child capable of agreeing to this information being portrayed about them?

 Consent as a child does not equal consent as an adult

Could this personal information impact their future?

Could it cause bullying?
Refusal of Employment?
Present damaging misinformation in a court case?

Can you present this information while maintaining your child's privacy


Awareness can come in many forms, it doesn't need to come by exposing your child's difficulties with public photos, children's names locations and toileting habits

Respect your child πŸ’—πŸ’—

Autism Advocacy

Advocacy comes in many forms regarding Autism

Campaigning against dangerous Autism treatments

Reporting parents who implement abusive treatments on their children

Phoning journalists to expose these treatments and rogue sellers

Educating parents about these dangerous treatments through social media

Talking a parent out of even considering it

Fighting for legislation

Educating parents about vaccine fears

Debunking vaccine myths

Expressing sorrow at the ableist view of the vaccine/autism connection

Making a stand against ABA

Fighting against ABA with ABA organisations

Expressing concern of ABA to parents

Hearing the voices of Autistics who went through ABA

Expressing your experience of ABA

Using social media to do this

Educating other autism services about the wrong practice of ABA

Helping schools with their autistic kids

Advocating for equity in education

Submissions on legislation

Helping autistics with their rights in hospital

Helping Autistics with their entitlements to welfare

Services and support for autistic adults. (Probably especially those who are chidfree.)

Addressing the current disproportionate focus on children and "families".

Ensuring that resources are directed towards autistic people, rather than NT parents.

Advocating to ensure Autistic people are controlling how money is spent and what it gets spent on.

Creating job opportunities for Autistic Adults

Improving care facilities for Autistics

Trying to help get airports and hospitals more autistic friendly

Using conferences to educate  parents about neurodiversity

Using conferences for Autistics to teach each other about neurodiversity

Opening a social media support group for Autistics

Opening a social media support group for parents

Contributing in social media groups for both

Writing blogs

Signing a petition

Going on a podcast

Phoning into a radio station

But also :

Giving a parent advice

Sending another autistic a ❤

Expressing your worries in the hope that others understand

This is ALL important advocacy work and I am quite sure I have missed a lot out.  Some people can do more than others.

The people who do it publically are incredible and can make a huge difference ☺

Others have different issues, roles, disabilities, priorities, work, life commitments.  Sometimes a simple 'like' that day may be all you have spoons for, but is still being an advocate

I see amazing people giving support daily in our sister group 'Supporty McGroup face' and many other groups


This is great work, be proud πŸ’•πŸ’•πŸ’•

Autism and Aggression

Autism and Aggression

Every week in the media there seems to be a sensationalist article out connecting Autism to Aggression.  Many people can be Aggressive, but when its someone who happens to be autistic, the connection is often made as if the two always go together.

To say aggression just comes with Autism can often be a false perception.  It can happen, and to help everyone involved we must always look into the reasons why.

Here are some great blogs by autistic people, and articles which will help you understand, and perhaps even resolve if aggression is an issue in your family :

A checklist for Identifying Sources of Aggression

Autistic Insights on Aggression, meltdowns and self injury

Adult Responses to Autistic children lead to Esculation or calm

Violent and challenging behaviour : The basics

How anxiety leads to disruptive behaviour

Understanding Autism, Aggression and Self Injurious Behaviour

Oppositional Definance or faulty neuroception

We hope this help, remember if you would like more personal support to join our facebook community :

Autistic Allies - facebook community

Non Verbal Communication - Introducing AAC

Non Verbal Communication 

For many autistic people, verbal speech is not achieved.  This could be for a number of reasons, such as severe dyspraxia or other sensori-motor disruption.  

However we would like to point out here that there have been incidents where a child has grown up being non-verbal, thought to be due to their autism, when in fact it was due to unaddressed medical issues, unrelated to autism.    We therefore recommend establishing why a child is non-verbal.

Giving a person a suitable means to communicate is essential, however the communication method looks.  It is only with an effective means to communicate can someone demonstrate their intellect, make choices, find autonomy and have their basic human rights met.

A few famous Autistics like Carly Fleishman have shared their stories of how once they were given an AAC, they were able to truly have their needs met and opportunities to show their true intelligence and abilities . 

The main, wide one you may of heard of is AAC, (abbreviated  from Augmentive Alternative Communication) 

Some therapists, (as we often see with ABA) believe that the only valued method is verbal speech and spend considerable time using communication methods as a means to that end.  However this can be at the detriment of enabling a person to have an appropriate means of communication.   Also the Science community in some ways is still discovering some of these methods as AAC is a very under-addressed and under-researched area. However communicating with non-verbal autistic people, the benefits are clear and there is increasing evidence that AACs actually, almost incidentally, enhance and increase the likelihood of verbal speech.

The following articles introduce you to AAC

This app is tremendous and free:
Snap Scene pathways

For more information or questions please join our facebook group 'Autistic Allies' and we can redirect you to some excellent guidance
Autistic Allies facebook group