The Autistic Community does not support Applied Behaviour Analysis (ABA)

Evidence to Listen to Autistic People and that the Autistic Community does not support Applied Behaviour Analysis (ABA)

It is a sad state of affairs that there was even a need in 2017 to publish research evidence that supports the stance that autistic adults should be considered as “experts” and involved in matters relating to autism, but clearly there was.   Despite this the alternative of autistic people being ignored, dismissed or silenced by others remains a common occurrence, experienced by many activists who wish to do nothing more than help autistic children have their needs met and grow up accepted for who they are, feeling safe and competent.  One example we hear over and over is the classic rhetoric used by ABA proponents “do not listen to autistic adults as they are able to communicate, use social media so are not like your ‘low-functioning’ 3 year old child”.

This article starts off with a reference to the 2017 research article about autistic adults as “experts” and other evidence supporting the involvement of autistic people, it then sets out evidence that the autistic community does not support ABA and finishes with what ASAN, the largest organisation run by and for autistic people have to say about ABA.

If you are unfamiliar with ABA and would like to understand more about why it is so controversial, there are a lot of articles, personal accounts and independent reviews of the ABA research “evidence” on ABA Controversy Autism Discussion page.

Also recently a number of academic and research papers  have been published about learning in autism.   These are showing that ABA assumptions about how autistic children learn are looking rather outdated and the efficacy of ABA approaches should be called in to question.   These provide substance to the view that ABA is effectively coercive compliance training.  Some of these papers are listed at the end for further reference.

If you would like to read how autistic people consider autistic children can be best supported we recommend the Thinking Persons Guide to Autism , Autistic Allies , a new but growing page, Better Ways than ABA , Parenting Children with Love and Acceptance, a community that provides a safe space for Autistic people in order to help parents learn from them, We are Like Your child and the Social Skills for Autonomous People blog –  Resources other than ABA.

Links to further reading and other sources of information are at the end of this article.

A child's bill of rights

[Image of writing on a sunset sky that says : A Child’s Personal Bill of Rights.  I have a right…To say what I think and disagree with others, to say No if I feel scared, uncomfortable or unsafe, to change my mind, to express my feelings, to ask for what I need, to be treated with respect, to live my life without being bullied, to be uniquely myself, to make mistakes, to use my talents an abilities, to choose how I respond to other people, to stick up for my rights!]

Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts

For recent evidence to support the involvement of autistic adults in matters relating to autism (“Nothing About Us, Without US“), we can point to the March 2017 research paper “Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts“.  This looked at the scientific knowledge about autism, how people define autism, and the stigmatizing conceptions of autism.  It concluded that:

“autistic people should be considered “autism experts” as they often build upon insights derived from the lived experience of being autistic by researching autism systematically. Autistic people who have developed heightened understanding of autism may be particularly well suited to teach other people about autism, as they tend to endorse less stigmatizing conceptions of autism, have reduced interest in making autistic people appear more normal, and may often have heightened empathy for the challenges others face”.

Other evidence supporting autistic expertise and involvement

Autistic expertise: A critical reflection on the production of knowledge in autism studies, March 2014  

“The involvement of autistic scholars in research and improvements in participatory methods can thus be seen as a requirement, if social research in the field of autism is to claim ethical and epistomological integrity.”

Shaping autism research and a participatory framework,

A new UK forum for an autistic participatory framework.

Educational discourse : medical/behavioural approach versus the social model

Dr Damian Milton , UK autistic autism expert and scholar, looked at the views of parents of autistic children, autistic adults and practitioners, teachers about best practice for the education of children on the autistic spectrum in his PHD thesis “Educational discourse and the autistic student: a study using Q-sort methodology” published in September 2015.

There are many pertinent points of interest in this document and some of these are set out below.  (References are quoted in summary as per the body of the document.)

About the general dislike of the behaviourist/medicalised deficit model:

“Timimi et al. (2011) rightly reject explanations of autism that locate the cause of ‘problems’ as solely within the individual child (e.g. a medicalised deficit model). Timimi et al. (2011) state that much psychiatric practice is of a subjective nature, and thus is open to a great deal of abuse, one of these being the abuse of normalisation: “The desire to control, amend or even extinguish human behaviours that depart from an increasingly narrow stereotype of normality has bedevilled the history of psychiatry.” (Timimi et al., 2011: 8).”

What the thesis showed was that there are significant different ideologies between autistic people and parents of autistic children:

“With some notable exceptions (eg Jones et al, 2012), current guidance regarding best practice for the education of children on the autism spectrum often reflects a medical/behavioural model approach that seeks to remediate perceived deficits (Cumine et al, 1998; Hanbury, 2005; Hewitt, 2005; Worth, 2005; Hagland and Webb, 2009).  Such advice can be contrasted with that given by autistic writers (Sainsbury, 2000; Lawson, 2010) often situating itself within a social model of disability.”

About the importance of listening to people who are autistic:

““Neurology and psychiatry have much to say about the specific formulations of autism, its origins and manifestations, but it is in listening to those who live with and in the condition that the outlines of what it means to be autistic are most significant.” (Murray, 2008: 60).”

Temple Grandin (1995) warns that a behaviourist programme is not appropriate for all on the spectrum:

“it is certain to be confusing and possibly painful for children with severe sensory jumbling and mixing problems.”

Despite this acknowledgement back then, more than 20 years later anxiety and sensory issues continue to be under-addressed or even dismissed by behaviour analysts  (because they are internal, ambiguous and can not be observed and measured.)  One such paper,  written by a US Board Certified Behaviour Analyst and recently circulated amongst UK ABA, that illustrates a lack of empathy in this regard can be viewed here.

The “them and us” attitude and difficulties in engaging with and being listened to by ABA proponents and their cult-like behaviour is not new:

““…the whole ABA movement appears increasingly more like a cult than a science: there is a charismatic leader, a doctrine, a failure to engage with criticisms, inquisition and denunciation of any who criticise (however mildly), misrepresentation of critics, and proselytising exercises to gain more converts and spread the word.” (Jordan, 2001, cited Fitzpatrick, 2009: 141).”

Meanwhile at todays meeting

Evidence that ABA is not supported by the autistic community

Listed below are a number of groups and organisations that have published position statements that they do not support ABA.  All these groups are on Facebook (a very popular way for autistic people to connect and share information) and a number have websites. To give a flavour of size and support of these groups, approximate membership figures are included as at April 2018.

Please do share with us the views of any other autistic led organisations

The Autistic Women’s Network AWN website (Facebook page 67,064 likes)  The AWN and members of the AWN board have published a number of blogs about the issues of ABA and have confirmed that they are happy to sign specific position statements against ABA.

Autism Friendly UK (15,206 members)

Autistics Worldwide (8,997 members)

Autistic UK (6,095 members)

Neurodiverse UK (4,626 members)

Autistic Allies (4,331 members)

Giraffe Party page (2,695 likes) refer ABA position here

Better Ways than ABA page (1,319 likes)

ABA UK Autism Discussion page (1,245 likes) created in 2017 it discusses the controversy of ABA both in general and specific to the UK

Autistic Strategies Network in South Africa. (995 members)

Autistic Q&A (721 members) post here

Autism: Presume competence (491 members)

ABA Leaks  (25,462 likes) a page that focuses on aversive ABA and discloses a unique timeline of its investigations of the ABA industry up to current day

 Autistic Self Advocacy Network (ASAN)

ASAN is one of the the worlds largest organisations run and led by autistic people.

ASAN is in the process of developing a series of resources for autistic people to widen current US providers and health plans coverage of autism-related services.  These services can include developmental approaches regarding social communication, sensory integration, emotional regulation, and adaptive skills.  More can be read here.

ASAN state that “Until now, much advocacy for coverage of “autism interventions” has focused on purely behavioral approaches, like Applied Behavioral Analysis (ABA). These interventions can be inappropriate or even harmful, and exclusive focus on coverage for behavioral interventions can result in limited access to evidence-based and emerging models that focus on improving relationships, communication skills, and development of skills that are meaningful to individuals’ quality of life.”

In May 2017, the Autistic Self Advocacy Network (ASAN) published its white paper:  Firsthand Perspectives of Behavioral Interventions for Autistic People and People with other Developmental Disabilities.

“We believe strongly that people with lived experience can provide well-needed perspective on what works and doesn’t work for them, and that service providers working with people with disabilities can benefit from first-hand accounts. As a disability rights organization rooted in the principles of self-determination, we also believe that autistic people and other people with developmental disabilities deserve culturally competent, trauma-sensitive, empathetic care.”

ASAN have a number of core position statements, that relate to autism interventions and therapies.  These include:

  • Nothing About Us Without Us
  • the use of scientifically unproven treatments and those that focus on normalization rather than teaching useful skills should be discouraged
  • Acceptance of difference is essential to understanding, accepting, and benefiting from the contributions of everyone in our society
  • Functioning labels significantly downplay the uniqueness of each individual, leading to artificial and inaccurate classifications that can cause Autistic people to be denied either services or opportunities.
  • ASAN advocates the passage of both federal and state legislation fully banning the use of aversives and banning non-emergency restraint and seclusion
  • Many therapies and products for Autistic children and adults are helpful and should be made more widely available, such as physical therapy, speech therapy, occupational therapy, and augmentative and assistive communication technology (including supported typing, facilitated communication and other methodologies that support communications access). However, ASAN opposes the use of behavioral programs that focus on normalization rather than teaching useful skills. One of the guiding principles underlying the United Nations Convention on the Rights of Persons with Disabilities is respect for the right of children with disabilities to preserve their identities. Autistic children should not have to grow up constantly being told that their natural behaviors are wrong and that they cannot be accepted as they are.

The current president of ASAN, Julia Bascomb’s views of ABA can be seen here.

Ari Ne’eman, ex-President of the Autistic Self Advocacy Network, notes: “ABA has a predatory approach to parents. The message is that ‘if you don’t work with an ABA provider, your child has no hope.”

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Research articles about autistic ways of learning that do not support ABA

Should we change targets and methods of early intervention in autism, in favor of a strengths-based education? L. Mottron, February 2017

Hyperlexia: Systematic review, neurocognitive modelling, and outcome, Ostrolenk, Forgeot d’Arc, Jelenic et al, April 2017

Repetition of information actually hinders the ability of autistic people to apply what they have learned to new situations, Carnegie Mellon University article, October 2015.

Learning in autism, Dawson, Mottron & Gernsbacher, 2008

Safe spaces on-line to learn about Autism

A blog that is periodically updated about safe places to learn on line as recommended by #ActuallyAutistic people

Further reading about ABA

10 Rhetorics of Applied Behaviour Analyis

Ask an Autistic #5 – What is ABA? (Video by Amythest Schaber)

Amythest Schaber’s Updated Autism ABA resource Master post – Neurowonderful

Autistics Speak But Are They Heard?  Milton & Bracher, Journal of Medical Sociology online June 2013

Why I left ABA, by a former ABA therapist on the dehumanising practice

Misbehaviour of Behaviourists by Michelle Dawson, discussing ethical issues of ABA.

I Abused Children for a Living, by another former ABA therapist

An Open Letter to Families Considering Intensive Behavioral Therapy, by parents whose child developed PTSD as a result of ABA

Tackling That Troublesome Issue of ABA and Ethics, from Emma’s Hope Book

How to tell if an ABA therapy is harmful

Are there any adult autistics who are willing to share their personal experience with ABA therapy? is a Reddit post in which ABA-damaged adults discuss their traumatic experiences

ABA Therapy is not like Typical Parenting (the difference between intense behavior therapy and more typical forms of rewards and punishments)

So What Exactly are Autism Interventions Intervening With? Milton 2014

Blog Post on Possible Reasons for Problematic Behaviour

Analysing Responses to ABA Critiques

ABA Discussion Page on Facebook

ABA Funding Withdrawn by German Charity

Better Ways than ABA on Facebook

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10 Rhetorics of Applied Behaviour Analysis (ABA)

ABA Rhetoric #1: ABA interventions are the most evidence-based effective autism intervention

Actually evidence for ABA programmes is overwhelmingly poor and considered low/ very low and this was confirmed once again by a May 2018 Cochrane review.

You can also follow #ABAResearch on Twitter for other ABA related research we have been sharing.

Also, at the time of writing this, Ambitious about Autism, who run two ABA schools and an ABA college around London states on its website that “there is very little research about how ABA is applied in ABA schools” and they don’t know why or when ABA will help or harm.

This poor quality evidence is despite over 500 published studies and three decades of ABA research. No NHS guidance recommends ABA programmes, yet ABAers think having low standards for autistic people is OK.  How many more decades does the global $8 billion ABA industry deserve?

No one seems to know for who ABA helps or harms.  No one seems to be able to find any quality evidence that those subjected to ABA have a better longer term outcome.  Rather we are finding increasing anecdotal accounts of harm from ABA ( as is addressed in ABA Rhetoric #3).

aba EVIDENCE

ABA Rhetoric #2: ABA is not offered in the UK, unlike the US, because of cost

In fact, ABA programmes are not offered due to lack of a quality and relevant research evidence base. Thank goodness for that with increasing anecdotal accounts of harm which are simply dismissed and not addressed by ABAers. Chris Packham was horrified by ABA in the US (Google: Packham ABA 2017).  ABA is akin to Trump’s fake news.

ABA Rhetoric #3: ABA is not abusive lol, it is just like normal parenting!

No it is not!  How ABA can abuse is really not understood at all by the field.  This article “Invisible Abuse: ABA and the things only autistic people can see” illustrates well what is happening in ABA, whether old or new, from the internal autistic experience.  As an update an academic research paper published in July 2019 Reframing Compliance: Exposing Violence Within Applied Behaviour Analysis discusses how an analysis of ABA methods in research published in the Journal of ABA in 2018 are linked to ways that are described in other situations as oppressive and violent. Another good article about the problems of ABA is that by Real Social Skills here.

The issues of ABA are not necessarily to do with a bad therapist, ABA not being done properly (in fact we prefer ABA that is not “genuine” ABA), a “tricky” child, or to do with the number of hours or explicit punishment.  Its issues include the coercion (lack of real choice), power imbalance, oppression, compliance, unnecessary overload, invalidation, rewarding masking or camouflaging (refer the #TakeTheMaskOff campaign on social media).  The increasing anecdotal accounts of harm can no longer be ignored.

ABA say no mask

A good, comprehensive discussion of how and why ABA is abusive was written by an ex-ABA therapist on this Madasbirds blog. ABA harm and links to PTSD are also discussed in this Autistic UK article written by Shona Davison.  The Appendix to the recent Labour Party Neurodiversity Manifesto is a critique of ABA and PBS

ABA harm often stems from its mindset. We think this little girl is being subjected to abusive ABA here .  However, the video was recently shared by UK ABA to show how great ABA is at getting a child to use verbal speech! What do you think?   With ABA the ends really do appear to justify the means and psychological well-being of the person is out of any ABA equation.

ABA Rhetoric #4: Behaviour Analysis is about understanding behaviour

No, ABA is about changing observable, measurable behaviour by trial and error until compliance is gained and the data demonstrates that is has changed.

ABA therapists often use Functional Behaviour Assessment (FBA) in an attempt to understand behaviour, however this is just what the behaviour is seen to achieve and is nearly always documented to be (1) avoidance/escape, (2) access to something tangible, (3) social attention or (4) internal reinforcement. This is nothing to do with the “why” or root cause of  the behaviour (ie anxiety, sensory, cognitive or other internal need).  In fact FBAs are not mutually exclusive and are a pretty useless way to categorise behaviour.  They leave the therapist guessing and using trial and error to get a behaviour change.

Think of a child, after coping with a day at school, in meltdown (a word not in the ABA dictionary).  How will a therapist observing (1), (2), (3) or (4) at home understand the behaviour?  You may think an ABA ABC (Antecedent, Behaviour, Consequence) analysis would help understand the behaviour.  But as in this example in practice does not help either.  The Antecedent in this situation is really unrelated to the cause of the overload and is simply the straw on the camel’s back.

The best way to understand autistic behaviour is to talk to autistic adults and read literature from autistic people all over the spectrum.  Have you ever spotted an ABAer doing this?  We only see them silencing autistics and instead talking to autism parents and fellow ABAers.

Board Certified Behaviour Analysts (BCBAs) think going to chicken training camps is a useful thing to do to learn how to better train autistic children!  Other ABAers think it is more than acceptable to talk about training animals and autistic people in the same breath as we see here with TagTeach Clicker training parents and presenters.  What must ABAers think about autistic people if they believe that they need to learn in the same way as we train animals?!

aba say no zoo

So the claim that ABA is a way to understand behaviour is highly questionable, not just due to its methods but because understanding autism and the internal autistic experience is nothing to do with ABA , and is not needed with ABA either for its certification, continuing education or practice. ABA is an “outside-in” approach, focusing on observable, measurable behaviours, not an “inside-out” approach, ie focus on meeting needs: there is almost no ABA literature on anxiety, sensory or cognitive differences.

ABA Rhetoric #5: ABA is regulated

No. ABA is not regulated or standardised. ABA tutors use psychological manipulation on autistic children as young as 18 months old for up to 40 hours a week and there is NO UK regulation, NO recognised UK supervisory body, NO complaints procedure. ABA is NOT even a recognised UK profession.  Almost anyone can be an ABA tutor.

We saw a recent example of poor ABA standards and lack of regulation in December 2017 when an independent rigorous scientific review discredited BCBA-D Dillenburger’s three year, five volume report funded by the Northern Ireland Government that spuriously recommended intensive ABA.  This report thought to have cost almost £1 million was annulled by the Government in 2018.

aba say no fingers point

ABA Rhetoric #6: only a handful of autistic people and allies dislike ABA

This is demonstrably untrue. You only need to search the #ActuallyAutistic hashtag to feel the weight of feeling against ABA in the autistic community.

In 2017 we published an article that showed that autistic adults should be considered experts on matters relating to autism and that 10,000s in the wider autistic community do NOT support ABA. Furthermore, 98% of over 5,000 autistic respondents said they did not support ABA in a 2018 survey by Autistic not Weird. 

aba say no betterwaysthanaba

ABA Rhetoric #7: Not doing ABA means not teaching skills…

“…and allowing your child forevermore to head bang with trails of blood along the floor and streaks of smeared faeces along the walls”.  Wow, what a scaremongering bunch the ABAers are.  There are always Better Ways Than ABA

They start with acceptance, understanding and seeking to meet internal and cognitive and other internal needs. They also presume competence and we have had trouble finding an ABAer who seems to who understand what this means.

Connect with the wider autistic community on-line to understand how to support autistic children or follow and ask on Twitter using the #AskingAutistics hashtag. Don’t train your autistic child like you would a chicken, dog or horse or be taken advantage of by ABA sales talk because you don’t understand your child or are unaware of the issues surrounding ABA.

Alternatives are also discussed in the Appendix to the recent Labour Party Neurodiversity Manifesto.

ABA Rhetoric #8: ABA today rarely uses aversives

This so illustrates how ABAers do not understand the psychological impact of what they do! Putting a child in an aversive situation in ABA “therapy” is common: whether ignoring communication of distress, timeouts, withholding loved things for reinforcers, not letting a child leave an aversive situation, physically prompting or repetition, repetition, repetition.

Even the BCBA Task List allows for punishments and the Behaviour Analyst Certification Board (BACB) and ABA International condone the use of aversive electric shocks, inviting perpetrators to speak at their conferences (Google: ABAI and Judge Rotenberg Centre).

ABA canine regimen

ABA Rhetoric #9: ABA is not about manipulation and compliance

ABA is every bit about manipulation and compliance.  In practice ABA teaches children that they have done the right thing when they get their reward, regardless of how meaningful, natural or comfortable to do so. Children learn that their own feelings and intuition do not matter and that doing good means pleasing the person in position of authority.

ABA issues of lack of self determination and autonomy are discussed well in this article published recently.

ABA Rhetoric #10: Don’t listen to adults with autism, they’re not like your “low functioning” 2 yr old

We hear this over and over again.  A cause of great divide in the autism communities, where ABAers like to do what they can to keep “autism parents” away from autistic adults and allies who speak out about how ABA has harmed them or their children or their colleagues and want nothing more than to help parents understand their child so that they do not go through the same thing as them.

By the way ABAers, it really is time you start listening to autistic people, including about the harmful language you use about us.  The majority of autistics prefer Identity First Language and consider (high/low) functioning labels problematic.  The links can be followed to understand more.

ABA say no robotMoving on to the reference about age, of course adults are not like two year olds!  Anyway, ABAers do not know what we were like as children or how we have developed and learned skills using non-behaviourist ways as we mature. And there was also no social media back then for “warrior parents” to share our most personal and intimate doings with you when we were younger!

Thank you 

Thank you Autistic advocates, individuals and allies for your input enabling us to carry on the discussion surrounding ABA controversy.

Publication notes

If we have made an error in this publication or there is additional or other relevant information that should be included then please message us on Facebook or Twitter.

Further reading and resource:

What is ABA?: https://www.youtube.com/watch?v=PEhlSPB9w7Y&vl=en-GB

ABA Controversy Autism Discussion UK: https://www.facebook.com/ABAUKAutismDiscussion/

Autistics and Allies Against ABA Ireland: https://www.facebook.com/Autistics-and-Allies-Against-ABA-Ireland-622764574790755/

Better Ways Than ABA: https://www.facebook.com/Better-Ways-Than-ABA-1853865171523852/

Safe Spaces on-line for Parents of Autistic Children to learn about Autism http://www.theautisticadvocate.com/2017/11/safe-places-online-for-parents-of.html

 

ABA Compliance is Abuse

One of our allies is collecting testimonials for research purposes from Autistics, parents of Autistic kids and professionals all opposing ABA.  There are many stories, all with their own painful details.

Passed on to us, with permission from the parent, this testimonial sends chills through our spines and is a good illustration of one of the reasons why we fight so hard against ABA.

We see no need to change the wording as drafted by the parent.

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“I guess I’m finally able to share our story. Maybe it will be cathartic in a way.

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.

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

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ABA is carried out by staff who are told to follow instructions, to implement ABA methods for behaviour change when children are non-compliant.

We wish this family well. Let us hope they get justice, and most importantly hope that the long term effects of this abusive action is minimal.

To reiterate, ABA techniques are used to get compliance through manipulation.  ABA is coercive.

Making a child comply is abusive and takes away autonomy.

Learning compliance leads to further abuse.

ABA compliance is abuse.

Thomas’s story

My name is Thomas. It is not my real name. I am using this name as I don’t want my abusers to find me.

I am 59 years old. My mother abandoned me as a young child and I was put in a foster home and an institution.  Both places abused me.

I was diagnosed autistic aged 4. Autism then was seen as a rare form of  schizophrenia and was a mental illness and they tried all they could to normalise me.

My foster parents abused me telling me my mother should have aborted me. I stimmed, tippy toed and screamed. They hated that. I couldn’t tolerate being touched, or noise. I was sexually abused from aged 4.
I was then insitutionalised where physical abuse continued.

I was forced to go onto strong meds and it did terrible things to my sensitive digestion.   Psychiatrists treated  me as mentally ill.

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They told me I would never be independant and treated me like a small child. Like many autistics in some ways I can be quite childlike, but I am  cognitively intelligent.

Like many autistics I often related better to objects than people. Again I was ridiculed, especially by psychiatrists.  All my life I have had a close attachment to one particular object , and they tried all they could to remove that from me.  That object is my Thomas The Tank Engine Ornament.

They inflicted Lovaas ABA therapy on me.

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They forced me to stop stimming and hit me when I did.

I love drawing, but if I drew the same picture twice in a week they yelled at me and forced me into more therapy.

They hated my special interests.  They tried to destroy all of them. Many were forced out of me and I still struggle to focus on them again.

I was punished for lining things up.

I was severly punished for not giving eye contact. I was kicked, hit and slapped on the face for not doing it. Eye contact was hell for me, and still is

I did not speak until I was 11. I was punished for not speaking. I was never given other options of communication, as verbal was the only thing they cared about.

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When it ended I was offered therapy. The therapist sexually assulted me.

Even though the abuse eventually got less, living in assisted care was still very problematic for me. Hearing people in other rooms, fire alarms going off, noises I couldn’t control. My meltdowns were very frequent due to sensory overload and I was scared I would hurt someone, or end up in prison.

 

With a lot help from friends we decided I needed to live outside the city and on my own and with nature. Humans scared me, I have difficulty processing facial expressions and so can find it hard to understand what people mean.  Animals however, I have a natural liking to. I was exhausted with the therapies and tired of having to adjust life to suit everyone else.

At last, I found a wonderful therapist who taught me life skills.   She let me be me, and listened to my needs.  We worked with my special interests to enhance my life skills and worked on my strengths, so I could have the life I wanted and needed.

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I have now been living on my own for 17 years. In the countryside where its quiet. I now take no medication, I stim all I need, I don’t force myself to keep eye contact with people.  I am managing my sensory issues with body brushing so I can hug my friends too.

I have 4 cats who I love dearly.

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I have sensory issues with my hearing, therefore I use industrial strength head phones, that have soft cushions. Strong lights hurts my eyes, so I have dark sunblocking shades. To keep the wind from me outside, I wear a big hat.

Routine is my life and it stops me getting too distracted. I thrive with routine, and can cope better with needed changes when I stick to these schedules.  As long as the change is gradually added to my planner, over time,  I can adjust.

I only go out when I can avoid crowds, perfumes overwhelm me so I avoid any places like this.

I can enjoy my special interests to my hearts content. I love to do artwork.

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Occassionally memories of repression can make me feel guilty about having special interests. I love my main object, like a person would love another. My love is so deep. No one can judge me for that now. They tried so hard to humiliate me for it, but they failed.  My Thomas the Tank Engine ornament always sits on my chest of drawers.

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I believe strongly that autistic people should be allowed to be themselves. Adjustments and accommodations need to be made. I try to help many families online with this. What is normal anyway? Normal is a setting on the dryer, and my normal is Autism.

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It was a huge honour to have the privilige to interview Thomas . He is an amazing person as you have read.

No one can deny that what Thomas went through was pure abuse. The hitting, slapping and ridiculing was unforgiveable.  He is left with depression, anxiety and many has many trust issues.

 

Not being allowed to be yourself is very problematic.   Yet ABA is still used to this day.  Reducing stimming, forcing eye contact, reducing special interests, only valuing speech as communication, instead of exploring other options such as AAC or sign language is ever present..  Not fully valuing sensory issues.  Trying to ‘normalise’ the child is still common practice. The methods may be gentler, but the principles and objectives often remain the same.

Follow this facebook page for discussion as to why ABA is still bad and can still be harmful for Autistics.

ABA UK Autism Discussion