Why don’t we know what PTSD looks like in autistic children? Why don’t we have a clear idea how many are experiencing it? I sense that this is because of the deeply problematic core belief in society that autistic distress is a ‘problem behaviour’ that is to be trained out of us. Looking at that list, anger, depression, aggression, irritability, panic, hypervigilance…. I’m mindful of how many behavioural-intervention checklists I see where those items are listed as ‘autism symptoms’ and the individual is relentlessly trained and rewarded for making their internal terror invisible to outsiders.
I am repeatedly struck with the realisation that carers are unnecessarily complicating childhood and family life – while believing they have no choice. They would probably say that it isn’t their fault, autism did it. Or that they’re just trying to help their child to succeed. Or that noone else can understand (“Walk in my shoes!”). After many years of hearing this same bullshit, I realise it simply isn’t true. Autism didn’t make your kid’s childhood disappear – them being put into hours of therapy every week did that. Autism didn’t make your child feel like someone was always watching them – the constant attempts to correct their natural ways of being did that. Autism didn’t make your child stressed – ableism did. You did.
The movement that I want to see, is one toward more simplicity for our disabled children. Autism isn’t destroying your children – you are. And you can’t stop doing it if you won’t evaluate your role in it.
Another theoretical account which might fall under the broad heading of integration and complexity is the interest-based theory, monotropism (Murray et al., 2005). This theory, developed by autistic academics, posits that the defining feature of autism is atypical allocation of attention. The difference between autistic and non-autistic people is characterised as follows: “It is the difference between having few interests highly aroused, the monotropic tendency, and having many interests less highly aroused, the polytropic tendency” (ibid., p. 140). Consequently, this model places causal primacy on the intense focus apparent in the diagnostic domain of RRBIs, with other diagnostic features following from this underlying difference. To the extent that social interaction requires diffuse and distributed attention, autistic people are not well suited to that activity. Monotropic theory, which awaits empirical testing, provides a vivid description of the autistic experience of novelty and change, giving a valuable insight into the autistic experience of a crisis, or “meltdown”:
To a person in an attention tunnel every unanticipated change is abrupt and is truly, if briefly, catastrophic: a complete disconnection from a previous safe state, a plunge into a meaningless blizzard of sensations, a frightening experience which may occur many times in a single day. (Ibid., p. 147)
Monotropic attention would lead to the development of specialised skills but also difficultly dealing with change.
The only theory I’m aware of that seems to make a decent stab at explaining the many seemingly disparate features of autistic psychology – from inertia to communication problems to hyperfocus and spiky profiles – is monotropism. However, this theory (formulated by autistics who aren’t professional psychologists) has received relatively little attention from psychologists and awaits direct empirical verification.
And quite commonly on Twitter, I’ve seen people call ABA “dog training for children.”
When I see that, I tend to go on Twitter rants in reply to it, because from everything I have read and seen of ABA, it is NOT “dog training” for children.
…I would never treat a dog that way.
In any case, very few dog trainers use the radical behaviourism that’s employed in ABA.
Most of the dog trainers I know mix and match behaviourism with other cognitive science research and other methods to create a more holistic approach to training their dogs. This is because dog trainers understand the limits of behaviourism on canines, because it doesn’t address the whole dog.
One would hope that someone considering using radical behaviourism on a human being would also recognize its limits.
So if it isn’t sufficient to properly train a dog, is it sufficient in educating a child?
A good dog trainer doesn’t extinguish behaviours which improve the dog’s mental health and happiness. But an ABA practitioner may not think twice before doing this to a human child.
Dog trainers understand that dogs need to chew and bark and dig, but ABA therapists don’t understand that autistic children need to repeat words and sentences, flap their hands, and sit quietly rocking in a corner when things get too much.
I updated “Bring the backchannel forward. Written communication is the great social equalizer.” with a selection from “7 Cool Aspects of Autistic Culture | The Aspergian | A Neurodivergent Collective”.
Until one day… you find a whole world of people who understand.
The internet has allowed autistic people- who might be shut in their homes, unable to speak aloud, or unable to travel independently- to mingle with each other, share experiences, and talk about our lives to people who feel the same way.
We were no longer alone.
I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “Autism, intense interests and support in school: from wasted efforts to shared understandings”.
…enabling autistic children to engage with their strong interests has been found to be predominantly advantageous, rather than deleterious, in school environments.
Furthermore, longer-term benefits have been associated with the pursuit of intense interests, with relatively few negative effects overall, which in themselves might only occur if autistic people are pressured to reduce or adapt their interests.
Having intense or “special” interests and a tendency to focus in depth to the exclusion of other inputs, is associated with autistic cognition, sometimes framed as “monotropism”. Despite some drawbacks and negative associations with unwanted repetition, this disposition is linked to a range of educational and longer-term benefits for autistic children.
The findings indicated four main reasons for repetitive behavior: enhancing the ability to function; reducing external stimuli and avoiding communication; coping with stress, distress, and excitement; and coping with social communication.
The findings suggest that repetitive behaviors play a functional role in people with HFASD and also serve as a way for these individuals to cope with their environment.
Functioning labels and medical model language aside, this study reinforces what autistic people have been saying about stimming.
For examples of popular stims, see this thread.
The language used to describe autism is currently the subject of intense and passionate debate. Our primary goals in this work have been to:
- Use language that is respectful to people on the autism spectrum and to those who support them.
- Recognise the very real challenges experienced by autistic people and their families, without portraying autism as a problem to be fixed.
- Ensure that the language we use recognises autism as a lifespan condition experienced by people of all genders and ages, from all walks of life and all around the globe.
For this reason we have not used any functioning labels in the text, and minimised any use of medical and deficit-focused terminology. However, we have included some person-first language (e.g. person with autism), although we know this will not be the preference of many autistic people. Our reasons for doing so include the fact that, historically, person-first language was part of the early disability rights agenda – this was not a language construction imposed by the neurotypical/non-disabled community. Gernsbacher recently pointed out that language can be stigmatising when different constructions are used to describe people with and without a disability – as in the phrase “typically developing children and children with autism” – and we have tried to avoid this throughout by using matched constructions as far as possible. An oft-cited online survey shows that about 60% of autistic respondents approved the use of the identity-first construction “autistic” to communicate about autism, and just under 40% endorsed “autistic person” specifically. Thus identity-first language receives strong support in the community, and many have written eloquently about the importance of this kind of language for their well-being and identity. We have no desire to over-ride this wide-spread and well-articulated preference, and the majority of language here is identity first. However, in the same survey, more than 30% of the autistic group surveyed approved the use of the person-first phrase “has autism” to communicate about autism. Moreover, about 25% of respondents on the autism spectrum selected either “has autism/Asperger’s syndrome” or “person with autism/Asperger’s syndrome” when asked to pick only one preferred language option. It is very clear from the data that, even within an autistic group, there is diversity in opinion, and we have chosen to reflect that diversity in our choice of language in this book. To readers of the future, we can only apologise if this choice seems to have been retrograde.
I’m heartened when autism researchers respect and promote identity-first language and eschew functioning labels. Make it a trend.
I updated “I’m Autistic. Here’s what I’d like you to know.” with selections from “Autistic children and intense interests: the key to their educational inclusion? – woodbugblog”.
In my study, I found that when the autistic children were able to access their intense interests, this brought, on the whole, a range of inclusionary advantages. Research has also shown longer-term benefits too, such as developing expertise, positive career choices and opportunities for personal growth. This underscores how important it is that the education of autistic children is not driven by a sense of their deficits, but by an understanding of their interests and strengths. And that rather than dismissing their interests as ‘obsessive’, we ought to value their perseverance and concentration, qualities we usually admire.
…the autistic children in my study were turning to their strong interests in times of stress or anxiety. And there has certainly been a lot of research which shows that autistic children and young people find school very stressful. So it might be the case that when this autistic trait is manifested negatively in school, it is a direct result of the stresses that school creates in the first instance.
Instead of being focused on pleasing the majority, the autistic quest for fairness and social justice is a constant theme. Instead of thinking everyone must show sophisticated interests in order to display a high social and intellectual rank, many autistic people have found joy in any number of wider interests. Those deep interests lead some to become the world’s experts in those topic, whether it’s forming world-leading and important collections, deep knowledge of subjects that benefit all of humanity, or a singular joy in a favourite topic or hobby.