Transcript of Ian McClure talk at NAS professional conference (edited down)

Ian McClure (IM):  The question I am trying to ask here is does it help us when we are trying to work with people with autism to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that idea in your head for a bit

IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about people with autism as egocentric, in the sense of a toddler. And if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a person with autism, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head.  We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forward from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that people who end up with autism, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing.  Maybe autism in a way is a social coordination disorder.  There’s something about the way that we coordinate ourselves socially, the cerebellum is doing that.  We know that people with autism often have difficulties with these systems, but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess, that isn’t quite right, that something is not quite right.

IM: So I am wondering about whether we should think about the idea of what I’m calling a kind of internal exponential trauma caused by the sensory and the neurological challenges of the brain of the person with autism.

IM: One of the reasons I am so keen on this idea is, this idea which I think a lot of us have who work with people with autism, is that somewhere inside that person is a, dare I say it, normal person and this is I think the experience of parents, the desperation that we hear from parents is I know there’s somebody in there if I could only just get at them and reach them.  Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)

….

IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists, by academic psychiatrists in places like London and America and stuff like that, is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing, they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator.  And I know I am sounding very cynical but I’m afraid, you know, that’s going on.

IM: Ok so I am just going to summarise. In autism my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda.  So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that people with autism are in some way experiencing the world differently and that can be incredibly distressing for them.  We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and could we have a, are we having possibly a traumatic encounter there, which is exponential because of the massive development that is taking place in the first year of life.

Linda Buchan: My name is Linda Buchan, I am a clinical psychologist and I’ve spent most of my working life asking people with autism what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have people with autism and people with dyspraxia and dyslexia and ADHD in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wrong. And to start to move back to things like refrigerator mother and prevention of autism, I think is not appropriate.

(Lots of applause)

IM: Should I respond?

IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted in that way.  All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is, I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our minds open about autism and I do not mean to cause any offence by, you know, saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years, so you know that is just my experience. I am worried that these people are being traumatised by something that is going on inside their minds, that’s all I’m trying to say to you, so thanks a lot  (applause)

Kate Fox (KF): Thank you, excellent, OK I am going to encourage, just cos I often do stand up comedy and poetry, and let me paint a picture of you of the worst possible scenario in which you might do stand up comedy, … then imagine you have to come on as an autistic, about to be outing yourself as an autistic comedian, imagine your warm up man, imagine that happened right.

KF: I spent the first part of this talk thinking, oh my god, I’m a genetic mess, made of two species, mashed together in an uncomfortable way I’m not taking him as my warm up man on tour.

KF: And a really important point for Simon Baron Cohen et al., it is possible to say these really valuable things but also it functions also as a piece of writing as a piece of rhetoric and if you are speaking to autistic people in an audience you have to find another way of saying some sort of genetic mess, you just have to don’t you, otherwise it’s not going to work. Otherwise we won’t go on tour together Ian, and I know it’s actually what you want.

KF: And then I’ll end with a minute long poem. It’s international women’s day. Part of the reason I got diagnosed was realising that the lack of diagnosis in adult female autism is a massively feminist issue and I have got a jolly lovely feminist poem to finish with

I need a female bodyguard

Mainly to guard my body against me

And all those voices saying it is not as good as it could be.

She’d clap a hand over my mouth when I got into competitive self-deprecation

I look like I got dressed in the dark

Well I look like an uglier female Kenneth Clark

Well I look like the exhumed body of Janis Joplin, dressed in clothes, rejected as too cheap by Primark

She’d show Trinny and Susannah the changing room door

Tell Gok Wan his control pants are a bore

Black out the pages of Heat magazine

When they slag of Fearne Cotton for having a spot on her chin

Put my copies of, does my bum look big in this or am I just alive magazine into the bin

She’d clap her hands over my ears

When blokes were extolling the virtues of early period Britney Spears

She’d stop me watching Hollyoaks actors mating

Being so self-depilating

Looking in the mirror when my self-esteem is shrinking

She may even stop me binge thinking

Ignore the critics, guard your…

Ignore the critics and sometimes the psychiatrists (cheers from audience)

Guard your mental health (but also listen to them, always have a balance)

Be a bodyguard for each other and yourself

Thank you very much for listening to me today, it’s been a privilege to be involved thank you

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Autistic parenting, negative perceptions, home education

Last week we had a rare check up appointment for my son at the place where he was diagnosed with autism. It was not a good one. At these appointments, I tell them all about our issues, there used to be lots. We had a very unhappy and stressed boy with lots of meltdowns, some quite violent. He would not leave the house other than school, home was his safe space and he needed all of his free time in his room recovering from the stress of school. School was incredibly difficult for him but he was attending. He used to be able to mask and behave as they wanted him to at school, but towards the end of his time there he couldn’t manage that any more and he was at risk of being seen as ‘ the naughty child’. At this stage 1 year ago, he had an appointment at the same hospital as last week’s appointment, we told them everything that was going on and asked for S to be referred to CAMHS because of his anxiety. We were told no, because he is autistic his anxiety needed to be viewed in the context of that. Blatant discrimination and probably not even legal but that is for another post.

Now we are in a place where we have a happy child, who rarely has meltdowns. He has started going out again (albeit not very often). We don’t make him go out, he chooses to. We go climbing, trampolining, Pokémon catching, swimming (all things that we couldn’t do when he was at school). He even has been to a home ed group a few times (which was sensory and social hell for me but both kids seemed fine). My daughter who was also anxious at school has now stopped with the term time bed wetting and is much happier. The two of them fight so much but since they both are doing home ed together we have had some times where they have been playing together. Last week we spent the whole morning trampolining (2.5 hours!!!). They were in fits of giggles laughing at me falling over as I tend to do. I have foot drop and I trip over my feet – hilariously entertaining. The good mood they were in carried on into the afternoon and they spent time together in the afternoon without me needing to referee. Home ed is going to be good for their relationship. Anyway, I digress. I’m just trying to explain how much better our life and the mental health of all of us is now we have put school behind us.

So given the little concern about us when it was all going wrong, you would think that at this appointment there’d be even less concern, but no that’s not how it works. I mention home education. Red flag! I mention my autism. Another massive red flag! An autistic mother who thinks she can do a better job than school (it would be virtually impossible to do a worse job than school). She started going on about the long term and drew me a picture of a number 8 and a number 16 with a line between them. ‘I’m not judging you but…’ (this was after I had been moaning about how all my experiences so far had been people thinking they know better than me and judging my parenting) ‘he’s 8 now, what about the long term, what about when he is 16?’

I was really confused by that question. She paused like I was supposed to answer it. I hesitated then said ‘I don’t know what you mean?’. I eventually realised she was implying that he wasn’t going to be prepared for college or getting a job, so I pointed out that many children are home educated until that age and there’s evidence that shows they do better academically. Plus just because he is being home educated now doesn’t mean he will be forever.

She continued to be negative and judgemental and I was getting flustered and upset. She said you are caring for them and teaching them, you’ve got your own diagnosis what if you stop being able to cope? I pointed out that the most stressful time of my and my son’s life was when he was in school. Now everything is going well. ‘Yes but if you protect him and keep him away from everything…blah blah blah… load of patronising nonsense’. I pointed out I was quite capable of getting him out of his comfort zone sometimes but I will do it safely and at his pace.

She mentioned some workshops that we go on in our region after a diagnosis. I’ve already done them. They were really excellent but I am already knowledgeable about autism so didn’t learn anything new. I tried to say that but it came out wrong and I said I knew more about autism than the people teaching the workshops anyway. I saw her roll her eyes. I came across as very arrogant, it was the wrong thing to say, but I was so annoyed at her reaction. She didn’t know my background. I may well be a clinical psychologist or a paediatrician for all she knew, but she just saw me as an autistic mother and she was making a judgement about my expertise based on that.

I started crying in the appointment. Would have been weird if I hadn’t as I always cry when I get cross and frustrated that I am not making my point as clearly as I’d like. I imagine my tears were further evidence that I am unable to cope. Not evidence that they are bad at their job because they don’t help when we need it, but now judge us negatively after we have been forced to solve the problems ourselves.

So in summary here is a list of injustices and disadvantages that you face when you are me, (an autistic mother to autistic children)

– school goes wrong because mainstream schools often aren’t flexible enough for autistic children

– unhappy anxious children, which leads to unhappy stressed parents

– FORCED to take matters into your own hands and withdraw them from school (‘elective home education’ is really not an appropriate name for it).

– then everybody judges you for thinking you can do a better job than school. Home educators are a stigmatised group, just like autistic people are.

– assumptions get made about your mental health and ability to cope just because you are autistic. There’s an assumption that the professionals must be better placed to know what is best for your children and an assumption that school is better than home education. These assumptions are being made even though I have been telling them how much happier we are and how much progress we have made since we started.

– You get put in a position where you feel the need to defend your decisions verbally. I process verbal Information more slowly than non autistic people do so I’m at an immediate disadvantage already. The stress of not making myself clear makes me anxious, which makes my communication worse and I end up putting my foot in it and crying. Unfortunately crying means I lose credibility.

It’s an impossible position to be in and one that so many autistic parents are familiar with.

The end result of this appointment is that my son has been referred to a psychologist. The irony is that his mental health is so much better than a year ago at the last appointment where they wouldn’t refer us then. We don’t need a psychologist. We need an education system that works for all pupils.

So there you have it. If anyone was wondering why some people decide to stick with their self diagnosis and not get an official one, this appointment provides an example of a reason. You will get negatively judged when people know you are autistic and this can be risky when you are a parent. I dread to think what she has written about me in the notes.

I would love to hear other people’s stories about similar experiences as an autistic parent or home educator in the comments.

Autism and challenging behaviour: Part 1

baby hedgehog

This is the first of a series of blog posts on a topic that will be familiar to many in the autism community – ‘challenging behaviour’.  Certainly as an autistic person, a carer to autistic people and a friend to many others I have gained lots of experience in this area.  I plan to cover conceptualisations and definitions of challenging behaviour and how these definitions have changed over the years, how communication can be a factor and how our conceptualisations impact our responses to the behaviour.

Challenging behaviour is a term that generally gets reserved for individuals who are part of disempowered populations (e.g. autistic people or people with learning disabilities). I do not think this is fair as often the so-called challenging behaviour has been preceded by some behaviour from the carers or service provider that is equally challenging to the autistic individual.  I therefore will (in a later post) propose a new definition of ‘challenging behaviour’ which will incorporate the behaviour of the service providers.

 

Prevalence of challenging behaviour amongst autistic people

Apparently challenging behaviours are common amongst people who are autistic.  There is a wealth of research that concludes this, however I am cautious of the prevalence figures I read.  Here’s an example of why caution is needed: Matson, Wilkins and Macken (2009) reported that up to 94% (!!!) of children with autism display at least one challenging behaviour.  In their study they use a scale called ‘Autism Spectrum Disorder – Behaviour problems for children’.  It includes items such as repeated and unusual vocalisations or body movements, or unusual play with objects.  If you define challenging behaviour as behaviours that are ‘unusual’ then of course you would expect a high prevalence rate in autistic people. We are a minority neurotype and our behaviour often seems unusual to NT observers but that alone is not enough reason to describe it as challenging in my view. This is just one example of researchers making judgements about autistic people from their (usually) NT perspective, there are many other similar studies. Definitions of challenging behaviour vary widely and most are flawed.

Another reason why prevalence figures about autism and challenging behaviour are extremely unreliable is because we don’t know who all the autistic people are.  Any stats where you see ‘x% of autistic people’ need to be taken with a pinch (huge bag?) of salt.  Those of us who know we are autistic are a pretty biased sample of autistic people.  We are more likely to be white males for a start, if we are female we probably got diagnosed late in life as I did.  Anyway, I digress. Back to challenging behaviour…

Despite me being critical of much of the research on prevalence of challenging behaviour amongst autistic populations, it is logical that there would be more than there is amongst the non-autistic population. Challenging behaviour is related to stress (Gerland, 2013, Milton 2016).  It is very stressful to be autistic in a society that has developed to suit the non-autistic population.  Stress amongst autistic people is likely to be for different reasons and the frequency and intensity is different which makes it difficult for a non-autistic person to empathise. As an autistic person myself, I have an almost constant underlying level of stress, probably from sensory overload and all the extra processing my brain is doing so something that may seem trivial to an observer can be enough for me to meltdown or snap.  Plenty of non-autistic people reach this tipping point too, perhaps not as often, but because other NTs usually can empathise with the reasons for their stress they don’t attract the label of challenging.

My next post is going to be about the label ‘challenging behaviour’ and how its use has changed over the years.

 

References

Gerland, G. (2013). Secrets to Success for Professionals in the Autism Field: An Insider’s Guide to Understanding the Autism Spectrum, the Environment and Your Role. Jessica Kingsley Publishers.

Matson, J. L., Wilkins, J., & Macken, J. (2009). The relationship of challenging behaviors to severity and symptoms of autism spectrum disorders. Journal of Mental Health Research in Intellectual Disabilities, 2(1), 29-44.

Milton, D. (2016) 10 rules for ensuring people with learning disabilities and those who are on the autism spectrum develop ‘challenging behaviour’: …And maybe what to do about it. United Kingdom: Pavilion Publishing and Media

Trust

As a parent I know what it is like to unconditionally love another human being. I can’t imagine any love stronger than that between parent and child. The feeling of responsibility when they are small and dependent can be overwhelming, yet the rewards make it all worth it.  As a parent I see my job as ensuring my children have the best chance of reaching their potential. Their long term happiness is the ultimate goal. I need to be certain they are safe and happy.  That is a duty my husband and I accepted when we decided to bring two lives into this world.

At some point though most parents hand over some of this responsibility to other people, perhaps nursery carers, school teachers, babysitters or grandparents. Most parents do it, they are glad of a break and they trust that their kids are happy and safe. Many kids love being in their environments away from their parents. It is a lot for parents to try and raise children all on their own with no support, even when there are two parents.

Imagine a situation where your child cries each morning before nursery. Or they start to hide under the table before school. Imagine hearing worrying talk about ‘enemies’ and ‘attacking’. Noticing signs of anxiety (for them) like rocking, spinning in the playground at school drop off time. Sometimes the child might be able to talk quite specificly about the problem: ‘I don’t like lunchtimes mummy, because the teachers make me go outside and I don’t like wearing my coat. Please can I go to a different school mummy? Do all schools make you wear your coat mummy?’. As a parent you go into school or nursery and sort out the individual problems. Sometimes school will do as you ask, perhaps your child is allowed to stay inside on lunchtimes. Sometimes they disagree with you, ‘but she’s so happy, she’s always the first one to put her coat on and run outside to play’. (That’s what happens when you teach compliance. If she says to her mum her coat bothers her, perhaps just believe it, she has no reason to lie). But at the end of the day sorting out individual problems is not enough. You have to trust that the people who are caring for your child, who are sharing responsibility for your child’s safety and happiness will make good decisions in your absence.

In some cases as problems arise over a period of time, you start to realise that the people who have temporary responsibility for your child’s wellbeing are actually not up to the job. Your trust was misplaced. I am writing about kind, caring people, but it is possible to be well meaning but not have the knowledge or the time to keep an individual child safe and happy. Perhaps the majority of the children in the class are doing ok but for the parent of children who aren’t part of that majority, that fact is unimportant.

For parents of autistic children I have seen situations like this many times. The trust completely breaks down. I don’t just refer to school or nursery settings either. My daughter once said to me that a family member who was babysitting called my son a ‘stupid boy’ when he was upset about going to school. Similar derogatory terms have been used by others who we trusted.

For me trust in this context is not about believing that people will care for my child in exactly the same way that I would. Perhaps they use different strategies, that may be fine. Trust isn’t even about believing the person/people will always tell me the truth. I have recently come to realise that sometimes people intentionally deceive me but they are still worthy of my trust. What is important is being able to trust that the people have the same end goal as you and they have the ability to achieve it. Being well meaning but incompetent is not good enough. Competence but with a goal that completely misaligns with mine is also not acceptable.

In terms of school, I don’t believe their goals are aligned with mine. I don’t consider sitting still at a table to work as important (lying on the floor with the dog beside you works better in our house), wearing the correct uniform (even if it hurts you), participating in all activities even if you hate them and they are stressful. Most of those goals are about trying to maintain order which is important if you want to teach 30 children at once.  These goals do not align with mine.

I do believe the teachers we have worked with, care about my child’s safety and happiness but they don’t seem able to spot when there are problems.  They have such little knowledge of autism, they mistake signs of anxiety as behavioural problems. So in that respect I don’t trust them to respond appropriately.

So what do you do when the trust breaks down?  You have to weigh up the damage being done by the people who are supposed to be helping and consider if the benefits are worth it.

In our case it isn’t worth it. School has done a lot of damage to confidence, self esteem, mental health.  The number of people we ask for help with looking after our children becomes smaller and smaller.  There are only three people who I trust to look after both of my children outside of the house (my husband and I are two of them!). I have a babysitter who comes to the house to help me but I plan very carefully when she comes and what she does.

The truth is most people have no clue about autism. Worse than no clue. Many have quite firm ideas, but they’ve got it all wrong. This makes them dangerous. We get used to the eye rolls, the comments and judgements. As time passes we see the progress our children are making. It’s not fair that we are doing it all on our own, but if we don’t trust anybody else to do a good enough job what choice do we have?

Autism in the media

What’s the first thing one does when one becomes aware of autism in the family?  I went online, I read books, I watched TV shows.  In my view, this can cause unnecessary upset when it comes to autism.  I have seen very few articles in mainstream media that give a balanced view of autism. Here’s an example:

Click here for an unbalanced article about the experience of children with autism, written by authors who have no experience of an autistic childhood and didn’t feel the need to consult with those who do

 

‘How does a child experience autism?’

If I wanted to know what it felt like to snowboard in the alps would I want the opinion of someone who had never done it? If I wanted to know how women experience being women would I be interested in the opinions of a man? Of course not. Yet in the article linked above, there are no opinions from an autistic child or (it appears) from any autistic adults.

It is possible the authors of the article are autistic.  They have ‘two children on the autism spectrum’ so it is certainly possible (likely?) that at least one of the authors is autistic. If that is the case I would love to have read about their own autistic childhood.  I prefer to read autistic people writing about their own experiences rather than attempting to speak for us all as though we are a homogenous group.

 

What is autism?

No one could write a paragraph adequately answering this question as there is so much still to learn about autism. The description of autism in this article includes a lot of clichés. Autism frequently gets described as a spectrum which to me is too linear.  It makes me think of a line of autistic people ordered from ‘low functioning’ to ‘high functioning’.  Humans are more complicated than that.  Our ability to function is dependent on many different things and will vary throughout our lives and even throughout each day. We don’t describe non autistic people as on a spectrum, that would be equally illogical.

I could also comment on the use of person first language (perhaps a future blog post), describing autism as a disability (already blogged on this here).  But what about describing us as different? I’d love to hear the views of other autistic people on this.  I am quite happy with that term but only if the non autistic person who describes me in this way understands that they are also different.  They are different from me. There is no one correct neurotype.

 

Autism facts

The statistics presented are not facts! The media like to simplify data and I understand why, but this can be harmful.  The data are useful and can help inform priorities for services and future research. Please don’t describe them as facts though.  These figures can obviously only be based on children who have been identified as autistic. I wasn’t identified as autistic as a child and I am an example of an autistic person who wasn’t bullied and wasn’t excluded from school. I believe this data to be biased and overly negative compared to reality.  You are more likely to be identified as autistic when you are struggling and therefore come to the attention of teachers.  It is unavoidable as we can’t know facts, whilst we don’t know who all the autistic people are, but the media ought to include caveats and inform people of limitations of research.  They have a responsibility to do that in my opinion.

 

Problems with social communication and interaction

Young people on the autistic spectrum live in a world that is difficult for others to understand, and one which has difficulty understanding their needs. They can have problems with social communication and interaction, which may result in low self-esteem and confidence. Socialising in groups can be difficult, so time away from school is often spent alone. That’s why the ski club is so important to the boys and girls at Kaimes

The above quote from the article demonstrates how autistic people so often are considered the ones with the problem.  I don’t think we have more problems with communication than non autistic people. Communication is two way! Why is non autistic communication considered superior to autistic communication?  When I misunderstand others it is frequently because they didn’t say what they actually meant?  Why is that my fault?

For me socialising in groups can be difficult and I do like my alone time.  But I would add that many non autistic people appear to have difficulties spending time alone. Many people need others around to keep them entertained.  Maybe we should help them improve their ‘alone time’ skills?  They could benefit greatly from this.

For me, it’s about personal choice.  I love that there is a ski club so that autistic children who want to socialise get an extra opportunity, but it’s absolutely fine to prefer time alone.

 

Difference between boys and girls

I enjoy seeing so much about female autism in the media but this article as with many others over simplifies.  It assumes gender is binary. It also doesn’t acknowledge that there are other children, not just girls, who are good at ‘masking’ and ‘fitting in’ thus at risk of slipping under the radar with potentially serious consequences.  As with the rest of the article this section is very medicalised with talk of ‘symptoms’, ‘diagnosis’ and functioning levels.

 

Eddie’s day

At first glance the section called Eddie’s day appears as though we could be about to get some insight from an autistic person.  But no, the contributions are from the neurotypical people around him.  I am not going to comment further than that even though I have a lot of opinions on this section.

 

Advice on how to support us

This is perhaps the worst section of them all.  As well as being patronising, with ableist language, it completely over generalises. This is what they have to say about slower brain processing:

That doesn’t mean you should talk slowly or over-pronounce- they are not stupid! Using a calm, reassuring tone of voice and smile can lower anxiety.

Thanks for the suggestion of smiling at us, just in case it gets forgotten that autistic people are humans who are equally deserving recipients of good manners.

The writers have assumed the reader is not autistic throughout.  Just like much of the autism research I read, this article is another example of ‘us and them’.  An article written about us, without our input, for the benefit of people who have to associate with  us.

 

 

 

 

 

 

Autism research

lake-louise

 

I love learning about autism at the moment.  I can spend many hours relaxing reading blogs, books and research.  Occasionally though, I find my special interest can be a source of irritation rather than relaxation. So today I am blogging because I want a bit of a moan.

I try and get to as many conferences as possible and have seen some excellent speakers talking about autism.  At my most recent one, I heard a researcher speak about the work they are doing to engage the autism community and how feedback from autistic people had enabled them to make many positive changes to their research design.  There is obviously progress, if the involvement of the autism community is sought where it wasn’t before. I don’t think this engagement goes far enough though.

‘Researchers’ and ‘the community’

Frequently, the speaker referred to ‘researchers’ and ‘the community’ but it seemed to be assumed that they are two mutually exclusive groups. The talk seemed very much ‘us and them’ as though autistic people were there to be studied, but not to study. I commented on the fact that autistic people carrying out the research would be an improvement and was told ‘it is hard to find autistic people who are able’. Given how we are disadvantaged both at school and in higher education I am sure it is difficult, but let’s look at this statement in more detail:

Firstly, earlier in the talk there was mention of how the environment was made more autism friendly so that ‘the community’ could come to their offices to be engaged. Flourescent lights turned off, annoying buzzy microphones not used etc. But if researchers need to make changes to their workplace in order to make it accessible to ‘the community’ then that is quite telling. It suggests their everyday workplace is not an accessible environment and so many autistic people may be prevented from getting jobs as researchers. Making workplaces accessible is a work in progress, I know that.  But you would think a place that is researching autism would be ahead of the game.  If there were a real belief that autistic people are best placed to research autism, surely more would be done to enable this.

Secondly, if existing researchers say publicly that it’s hard to find autistic people who are able enough to become researchers, then that’s going to reduce the likelihood of a) an autistic person believing themselves capable of this achievement and b) disclosure of autism by any autistic person applying for a research post.  It sends out a pretty clear message to any one applying for a job – the employer believes non autistic people are more able than autistic people.

My view is that problems with how we identify autistic people (or often don’t) also contribute to difficulties finding researchers who are openly autistic. I believe there are some autistic people who don’t require any support. Some of us have learned to get by, perhaps at great cost to our mental health. I suspect, it is often the more intellectually able who have been able to do this.  Seeing as being a researcher is intellectually challenging, we are talking about the people who may be most suited to becoming researchers.  This group of intelligent autistic people are often precluded from a diagnosis as they have become so competent at copying the behaviour of non autistic people.  Many people have complete faith in the diagnostic criteria and believe you can’t be autistic unless a medical professional can see it.  So ironically, the years of research by primarily non autistic people have resulted in diagnostic criteria which may not be appropriate for recognising the autistic people who may make the best researchers.  Without that recognition these autistic people may never pay much attention to autism as a field.  There is no doubt my interest in the field has been sparked as a direct result of realising my family and I are autistic.

Representative samples

There is another point I would like to make about the representativeness not only of the autistic people you are using in your sample, but also the autistic people you are engaging whilst designing the study.  This particular researcher was confident that in one particular area, the sample was representative of autistic people.  I would like to say here (as there was no opportunity at the talk) that if you are researching autism, it is in my humble opinion, never possible to say that you have a representative sample. We don’t know who all the autistic people are and I believe the diagnostic criteria are biased.  It is based mostly on research done on males for a start, and some say that females present differently.  So one can say one’s sample is representative of people with an autism diagnosis but I do not believe people with an autism diagnosis are reprentative of the autistic population.

Anyway, I am glad to get that off my chest.  It would be so good to be able to have a proper debate about these issues with those who are doing the research. In the absence of that opportunity, blogging will have to suffice.  Please comment if you have any opinions on the matter.

 

 

A Letter to the Parent or Carer of an Undiagnosed Autistic Girl

The Misadventures of Mama Pineapple

[Trigger warning: mental illness]

Dear Parent/Carer,

I’m writing to you in my capacity both as the parent of a little girl awaiting assessment for autism, and as an adult autistic woman, and one who has spent most of her life, until the age of 36, undiagnosed.

I know you’ve been wondering about your girl. Perhaps someone has said something – a family member, perhaps; a friend; a teacher. Or, maybe, you’ve been thinking for quite some time that this little person might be a little…different. ‘Autism’ is the thing that’s been suggested. And you’re wondering.

Perhaps you’re wondering about the formal assessment process. Perhaps you’ve already begun to get things moving, or maybe you’re little further down the line, and it’s dawning on you that the whole thing is far more arduous than you’d ever imagined. I get that. Totally. My family is there too.

And so, you’re thinking you…

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