I found this talk/Q&A session on twitter by Nick Walker – it is about neurodiversity and covers ABA and behaviourism. I definitely recommend having a listen. In fact I recommend all of Nick’s work on neurodiversity, I have read a lot of it.

Here is the link for the Nick Walker talk I am referring to: https://t.co/2kGo6MSDjs

Here are some of her points about why ABA is problematic:

1. It can be harmful – there is starting to be research on this now (Anderson, 2022; Cumming et al., 2020; Harte, 2019; Kupferstein, 2018).
2. In her lived experience the people she knows who are doing well in life e.g. having successful relationships, managing careers and living past the average (low) life expectancy for autistic people tend to be the ones who did not have ABA and those she know who did are still dealing with the PTSD that came from their childhood including ABA.
3. Behaviourism stifles creativity as compliance is being taught.
4. Teaching compliance makes already vulnerable children at an increased risk of sexual abuse as they are being taught to comply with adults without question.
5. Behaviourism removes intrinsic motivation – the reward becomes the motivation
6. The original evidence by Skinner did not have control groups so nobody knew if the children would have learned skills without the ABA (we now know that they do of course, as all the autistic children I know have learned skills, perhaps at a different pace or in a different way to non autistic children)
7. Apparently (and this is new information for me) the research assistants who worked with Skinner (Skinner is now dead) now speak about some of the evidence being fake. He would stop the experiments if they weren’t going his way.

Walker argued that no universities who consider themselves ethical should be teaching ABA it should only be in universities as a historical point about the barbaric way we used to treat autistic people.

Are there any ways that ABA or any kind of extreme behaviourism can be used ethically and with a low risk of harm? My view is if it were done on adults who were able to give fully informed consent (which should obviously include being able to withdraw consent at any time) then that would be acceptable. I have never heard of ABA being done that way. Are milder forms of behaviourism useful? I have seen it used as a parent in ways that don’t cause trauma and are fun. As always it depends on the child and parents often know their child well enough to make those decisions. I can easily tell when my children are distressed despite them not always communicating it in typical ways.

There was one point I strongly disagreed with in Walker’s talk. She said somethings like if parents put their child in ABA after they have heard all of the problems with it from autistic people, they are bad people. And same with the ABA practitioners (or ‘perpetrators’). I think that is an oversimplification. In the case of parents: when you are a parent you are bombarded with information from many different sources. I do not think we should assume that parents have the time and the skills to be able to process and critique all of the information they get on the many kinds of parenting issues. This would be true of any parents but it is even more the case for those parenting disabled children when time is even more of a rarity. Often, the mainstream information you hear is still very ableist (though things are certainly improving in the UK) so it is not that surprising that lots of parents end up with ableist parenting practices. Eventually, if they are lucky they will find the autistic community and will be able to properly digest what they hear. It is sometimes too late by then.

As for ABA practitioners the junior ones are often very young, and have no knowledge at all on autism or alternative ways of supporting autistic people. They are ripe for indoctrination into the ‘cult of ABA’. Sometimes those practitioners decide to get a qualification in Autism and come on an autism course (such as the MA I did at Sheffield Hallam university or the one I teach on at Edge Hill university) where they may be taught (often by autistic lecturers and tutors) more about the alternative views on ABA. It is sometimes their first knowledge of the harm they might have been doing to the autistic people in their care. I have seen ABA practitioners become quite upset when they start to learn more. Remember you do not need any qualifications or knowledge in autism to become an ABA practitioner, even though it is extremely likely you will be working with autistic clients. I do not think the ABA practitioners are bad people. We are all subject to outside influences and for many the biased information in the mainstream comes first and it can then take time to unlearn all the harmful things you have learned about autism, autistic people and how we should be supported. It is also important to remember that cognitive dissonance makes it less likely that people will pay attention to evidence that they are making a mistake. Humans tend to believe the evidence they come across first.

How do we change people’s minds when they believe that ABA is the best way to support autistic children? I do not think attacking works particularly well. Gentle persuasion is sometimes more effective. Stephen Hassan (his website) is a cult expert and survivor and I have been learning a lot from him recently (Cults and mind control are my new autistic passionate interest so you can expect it to get a mention a lot when you talk to me nowadays). He advises on how to get people out of cults when they have been mind controlled and he uses a gentle approach. He would advise you talk about similar cults and tell stories about other people who believe inaccurate things because of mind control. He was so indoctrinated in the Moonies in the 70s, on his podcast he said he would have been capable of killing for his leader if he were ordered to. Now he uses his experience to supports other to get out of cults. I think it is a good approach. If you attack people stop listening and when supporting a cult survivor the last thing you want is for them to cut you out. In the context of ABA, we want to see newer less indoctrinated ABA practitioners to be learning about the risks of ABA and then leaving the industry and helping to spread the word. Same applies to parents, we want them to learn from autistic people and ABA survivors, because that is the issue – they need amore rounded education so they can make informed decisions.

Our job as autistic academics and activists is to keep plugging away and getting the message out. It is hard, especially when we don’t have the budgets that ABA providers have – autistic academics and researchers do a lot of work for free.

References

Anderson, L. K. (2022). Autistic experiences of applied behavior analysis. Autism, 136236132211182. https://doi.org/10.1177/13623613221118216

Cumming, T., Strnadová, I., Danker, J., & Basckin, C. (2020). “I Was Taught That My Being Was Inherently Wrong”: Is Applied Behavioural Analysis A Socially Valid Practice? International Journal of Arts Humanities and Social Sciences Studies, 5(12). https://www.emerald.com/insight/content/doi/10.1108/AIA-04-2020-0025/full/html

Harte, C. (2019). Reframing Compliance: Exposing Violence Within Applied Behaviour Analysis [City University of Seattle]. chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/http://repository.cityu.edu/bitstream/handle/20.500.11803/811/CiaraHarteThesis2019.pdf?sequence=3&isAllowed=y

McGill, O., & Robinson, A. (2021). “Recalling hidden harms”: Autistic experiences of childhood applied behavioural analysis (ABA). Advances in Autism, 7(4), 269–282. https://doi.org/10.1108/AIA-04-2020-0025

I recently did a talk at the South Yorkshire Autism Fayre and they are happy for me to share it here. Thank you to Autism Union for inviting me to speak.

This presentation is an hour long and is good for autistic parents or parents of autistic children and any one who supports us.

Content warning for miscarriages of justice and false accusations of child abuse.

Here is proof that it is possible to define autism without all the medical model deficit based language:

Luke Beardon’s (2017) definition:

Autism refers to a neurotype that leads to a cognition that is qualitatively different from that of the predominant neurotype (PNT) in the way that information specific to communication, social interpretation and interaction is processed and understood; and to a perceptual reality of the sensory environment that differs considerably from one individual to the next

Julia Leatherland’s (2017) definition

Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity

What are people’s thoughts and does anyone have any other good definitions?

This book is an easy to read introduction to the basics of autism. It is aimed at adoptive and foster families and therefore a lot of the second half discusses the complexities of attachment and trauma when combined with autism. Many autistic people have experienced trauma, so I believe the book is useful to a much wider audience than that which it targets.

The book begins by explaining autism in an easy to understand manner, which is more challenging than one might think as there are so many myths and unknowns when it comes to autism. Different people have different (and often very strong) views on the ontological nature of autism. Fictional children are used to illustrate points throughout the book which I enjoyed.  It was another aspect which makes the book more accessible than many autism books.  I like the use of illustrations throughout the book. In particular the balloons which were used to illustrate what is meant by the ‘spectrum’ worked well. The spectrum is often conceptualised as linear – from mild to severe – but the balloon illustrations and the written description help to demonstrate that the spectrum should be considered more like a 3d constellation where each autistic person has their own version which can change throughout their life. 

The importance of an individual approach to supporting children is emphasised and there are many practical strategies for parents and carers to try. I was pleased to see a reasonable amount of information about supporting the child’s sensory needs as this area can sometimes be neglected, yet for some people it is one of the most disabling aspects of autism. 

The authors demonstrate a good understanding of the controversies and politics around language such as words like ‘disorder’. However, they sit on the fence somewhat by using both identity first and person first language (e.g. ‘autistic child’ and ‘child with autism’). Whilst it is true that research shows there are many different language preferences amongst different autism communities, there is now a lot of evidence that autistic people, in the main, prefer the more positive identity first language (Kenny et al., 2016). I felt like an opportunity was missed to inform readers about the importance of listening to the autistic voice. With this in mind, sections or examples from autistic adults would have been an excellent addition, in particular those who have experience of adopting and fostering either as a child or foster carer. 

Whilst the beginning of the book has general information about autism and how to support your child, the later chapters are more specific to adoptive and foster families with transitions, attachment and trauma covered in a similar accessible style with lots of practical advice.

Although this book is aimed at adoptive and foster families it would be suitable for all parents of autistic children.

Reference

Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2016). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism, 20(4), 442,462.

Gillian Loomes and I have started a fund to support autistic people who do work for the autistic community such as training or speaking at conferences. During this time of global coronavirus emergency many have lost all of their income.

To read about the new fund, to donate or apply for some money have a look at the gofundme link below. Any support is appreciated.

As part of my MA in autism I also did some primary research on the reflections of autistic parents who home educate their autistic children. I was interested in this topic as an autistic mother to two autistic children who both have been home educated when mainstream education did not work for them. It was noticeable when I got involved with the home education community just how many people were autistic, both parents and children. Mainstream education in its current format just does not work for some children. No other research had been done on this topic at all and I felt it was important that we tried to understand why so many autistic families end up home educating. There is research on home education and disabilities more widely but I was specifically interested in the views of autistic parents.

The research was a qualitative study using semi-structured interviews. Four participants were interviewed. The requirement to be a participant was that they were an autistic parent who had home educated their autistic child or children. The two main themes which I identified using content analysis were ‘health and school withdrawal’ and ‘school experiences’.

For every participant in this study the main motivator for school withdrawal was a significant decline in mental health and wellbeing. This was the case in my own personal experience and is consistent with other research on home education. Signs of stress such as ‘school refusing’, ‘meltdowns’ and ‘self harm’ were mentioned. One mum described the self harm of her five year old:

“He kept trying to put his fingers down his throat, he threatened to throw himself down the stairs and he tried a few times. He tried to throw himself into a stinging bush, a stinging nettle bush so that he could get out of going to school. Anything he could think of really, it was horrible, absolutely horrible.” 

Overwhelmingly the children’s school experiences were negative which concurs with the literature on home education. Parents described teachers dismissing their concerns, disbelieving diagnoses and not implementing support (even in two cases where it was recommended by an educational psychologist).

Every parent described a ‘last straw’ event which had followed a lengthy period of stress and trying to make school work. This varied from a disagreement over support (e.g. a flexi-school request being denied) to an extreme meltdown such as the following:

“One day they called me at (work) and said we just can’t calm her down and my dad wasn’t around so I drove there and it took me about an hour to get there and she was still in full meltdown when I got there.  She’d taken her clothes off, I didn’t even recognise her when I saw her, she was in a terrible state and the teachers had no idea what to do with her so I calmed her down and I called a crisis meeting … she couldn’t go back to that school because it was detrimental, it was damaging her … mental health and at that time she didn’t speak at home, she didn’t speak to anyone. She came home and she read, she didn’t function.” 

With regard to their own autism parents described situations where it had both benefited and hindered them. Some examples of benefits were empathising with their children’s struggles, good attention to detail (with reference to the paperwork for an EHCP) and not caring about breaking societal ‘norms’ (e.g. children should go to school).  Talking about the negative aspects one parent said she was told by a teacher that she appeared anxious – she perceived the implication to be that her anxiety was causing her children to be anxious. As an anxious autistic parent, I have also had this experience.

This was a very small scale project but gave some important insights into why some autistic parents home educate. It was not intended to be a representative sample of autistic parents. The participants came from a specific group who had ‘chosen’ to home educate. (We are down in government stats as people who have chosen to home educate but I do not consider it a choice – I was forced to home educate to save my child from PTSD or other serious mental health problems). There are autistic children who are happy and well supported at school but this project was not attempting to research their experiences.

My research showed what the majority of us in the home education community already know. Autistic children are heavily disadvantaged at school, they often are not given appropriate support and home education is an option that can keep them safe.

As part of my MA in autism I did some primary research on autistic parenthood. I am in the process of preparing this for publication but for now here is a short summary.

I completed a qualitative study with 6 autistic parents as participants and I interviewed them to get their perspectives on the pros and cons of being an autistic parent. The word interview is used quite loosely – I did not just offer a traditional face to face research interview, I wanted the autistic person to be able to communicate in the way that worked best for them. Two of them chose a written format.

Why I chose this subject?
If you google autistic parenthood you mostly find links about being a parent of an autistic person. The same applies if you search the academic literature – there is so much research about how hard it is to be a parent to an autistic child (not so much from the child’s perspective unfortunately). There was some research happening in Cambridge (now published; Pohl et al., 2020), I had a PhD thesis by Burton (2015) and that was pretty much it for my literature review so I had to look at more general literature about being a disabled parent. I know of a PhD that is currently being done on autistic motherhood (by Paula Sanchez) and I was a participant in somebody’s PhD research about autistic parenthood at the university of Sheffield so hopefully we will see more published soon.

Apart from the dearth of research on the subject and the obvious need, the other reason for my interest is because I am an autistic parent and my experience does not fit at all with the stereotypes you hear about autism and parenting. Mostly people assume we make bad parents and it certainly is not true in my case or for many of my friends. I wanted to make sure my research explored both the positives and the negatives of being an autistic parent.

Results
I won’t post detailed results seeing as I am planning on publishing them but there were some key themes which I will mention.

Every participant had had negative experiences with professionals. One mum had been accused of fabricating and inducing illness in her children (used to be called Munchausen’s by proxy). It was nonsense and the mum was later fully cleared but the stress of it was immense and had terrible consequences on the whole family. Since doing my research I have come across many other mums (it is almost always the mum) that have also been accused of fabricated and induced illness (FII). Three parents were concerned about losing their child(ren) at one point. Only two parents had had any positive experiences with professionals. The relationships with professionals were extremely concerning.

Empathy was an important positive for the autistic parents. All had at least one autistic child (this was not a pre-requisite of participating but it is not entirely a coincidence either as parents often realise they are autistic because of a child’s diagnosis). I would be interested to know if the fact that their children were autistic was why empathy was considered as a positive. It surely must be much easier to empathise with (e.g.) a child having a meltdown if you have experienced one yourself. Research on this and Milton’s (2012) double empathy problem would be interesting.

An area where these parents seemed as though they would benefit from support was executive functioning (an umbrella term for a number of cognitive functions such as planning and organising, impulse control, working memory). Some autistic people do not have executive functioning difficulties, it isn’t a core part of autism as such. Many of us do struggle in this area though. Whether this is because we are autistic or because of the many things that can co-occur with autism, no one really knows. Stress, anxiety, lack of sleep can all be responsible for cognitive problems. I have muscular dystrophy (apparently this co-occurs with autism though I still only know children with both – no adults). Myotonic dystrophy (the kind of muscular dystrophy that I have) can cause ‘focal dementia’ which increases with age – so that is another likely reason for my executive dysfunction. Lots of us have ADHD or dyslexia too. At the end of the day it does not really matter why some of us have these difficulties but once identified it would be great if there were some support available.

The write up of this research is currently being prepared for publication (EDIT: It has now been accepted for publication in May 2021). It was a 12k word dissertation and I need to get it down to only 4k for the journal in which I would like it to be published. I have spoken about it at conferences or at workplaces (e.g. a CAMHS department) quite a lot already. Get in touch via this website if you think a talk would be useful at your workplace or conference.