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Who decides if I’m autistic?

5/4/2018

30 Comments

 
I thought the recent documentary on Channel 4 "Am I Autistic" was much better in terms of its attitude to autism  than previous generalist programmes on the subject. The main presenters where “out” autistic women (I think many people working in the autism field are unaware or closeted autistics) and the general attitude to autism although still regarding it as a somewhat unusual and exotic condition acknowledged the positives as well as the challenges. However, my default tends to be to notice flaws, so I'll focus on some of the interesting contradictions that surfaced for me when watching it.

The programme showcased Jo and JP, who had been aware that they were different all their lives (a sure pointer towards autism in my book) and who were wondering if they were autistic.  There were two autistic women presenters, Georgia and Sam, and a non-autistic narrator, Anna.

I found it paradoxical that Anna, who explained her interest in autism as due to  having an autistic nephew, could say categorically after hearing about Jo's difficulty with small talk "I have trouble with small talk and I'm not autistic" while at the same time claiming that for Jo, the only way to know for sure if she was autistic was to get a diagnosis.

Surely, if the only person who can tell if you are autistic is a clinician, it would also require  a clinician to tell if you're not autistic. If self-identification as autistic is not regarded as definitive until confirmed by a clinician, then the same should apply to being non-autistic (especially perhaps if you have autistic family members since we know that autism runs in families).

We also know all autistic traits are human traits and there is no currently measurable biological marker for autism so essentially a diagnosis is the opinion of  a clinician based on behaviour, self-reporting and family reporting. This makes it very susceptible to bias.

This programme, while supporting the diagnosis by Simon Baron Cohen (the originator of the discredited male brain theory of autism) as the arbiter of whether Jo and JP were autistic, also argued that more males were diagnosed because "females camouflage" their autism.  Thus, whilst they acknowledged that autistic females are under-diagnosed, this was attributed not to the lack of expertise of diagnosticians, but rather blamed on autistic women, because we don’t present like autistic men.

For people who have always felt different in some way, identifying as autistic can be the gateway to self-understanding and finding the courage to be authentic rather than constantly trying to fit a mould of “normality”.   Failing to get a diagnosis because you have managed to hide your differences or because you are female, can be a devastating blow*.  

My concern is that people who "fail" the diagnostic test feel that they are “frauds” living in a no-man’s land; unable to function typically, but denied the possibility to claim and explore a condition which explains their difficulties.

Autism awareness is not evenly distributed throughout society and therefore many autistic people are without access to information that could transform their lives. In this situation formal diagnosis can be helpful - the artist Sonia Boue told me that her autism diagnosis was a positive turning point because it helped her leverage her strengths and recognise some of her challenges were due to her brain wiring rather than personal weaknesses.  However just because something can be helpful does not make it optimal.

The idea that someone is only autistic if they are certified as such by a clinician is equivalent to saying you are only gay if a psychiatrist says so, that your own desires are not what determine your sexuality. In common with many other autistic people I believe that autism needs to be de-medicalised. Like homo-sexuality autism is a natural part of human diversity and needs to be recognised as such and identified by individuals, society and the medical profession rather listed in a psychiatric manual and diagnosed.

Of course autism can be identified by clinicians, in fact they need to be trained to recognise it because it affects the the way treatments for mental and physical conditions are best administered.  This doesn’t mean they are appropriate gatekeepers to autistic identity.   There is an autistic community, and like other communities we need to control our boundaries rather than have them defined by people with agendas and sensibilities that we might not feel aligned with.

* See “Adults’ Experience of an Asperger Syndrome Diagnosis Analysis of Its Emotional Meaning and Effect on Participants’ Lives”  Trevor Powell DClinPsych, Louise Acker, BSc 2015 http://journals.sagepub.com/doi/abs/10.1177/1088357615588516

30 Comments
Shanna R Myhand
11/4/2018 04:48:04 pm

Yes! This is exactly what points i have been trying to say and get across and you worded it just right. I agree with so much of this..

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Caroline Hearst
11/4/2018 08:46:49 pm

I'm glad it resonated with you Shanna

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Tamara
12/4/2018 03:45:40 pm

Completely concur! I'm 43 and awaiting diagnosis. I feel judged by friends and family like I cannot talk about or claim the title autistic until I am medically diagnosed. I have masked or hidden all my life and feel like giving up but I have children like me and they need me to be strong and follow thru. Tough thing to do with so much opposition so close at hand. So thank you, it does help me hang on knowing I'm not alone 💜

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Caroline Hearst
13/4/2018 04:58:28 pm

You are very much not alone in this, and the more people feel confident to speak up the less alone you and others in this situation will feel! I think the autistic community is getting more confident and outspoken by the day, but we are not nearly there yet!

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Planet Autism
7/6/2018 02:47:31 pm

Take heart Tamara, if self-identification is enough for you, that's what matters. Clearly you feel you have differences and your family need to accept this, whatever the label.

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Sashina
16/4/2018 11:05:11 am

Yes yes yes! "Failing to get a diagnosis because you have managed to hide your differences or because you are female, can be a devastating blow.
My concern is that people who "fail" the diagnostic test feel that they are “frauds” living in a no-man’s land; unable to function typically, but denied the possibility to claim and explore a condition which explains their difficulties."
This is my situation: I'm a 47yo woman and have failed the formal diagnosis (using two diagnostic systems) by two clinicians. I'm not sure where to go from here as I feel let down, I feel like a fraud, and I feel guilty. I've ticked all the boxes for a diagnosis but my masking and compensatory behaviour has been such that my life is not affected adequately for a medical diagnosis, although the second clinician has stated I am definitely on the spectrum.
Would be interested to explore the push for 'self-diagnosis'.
@Tamara, I hope you get the answer you need as it will surely be liberating.

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Caroline Hearst
17/4/2018 09:27:10 am

Self- identification is accepted in many autistic communities/spaces. I facilitate groups for AutAngel (www.autangel.org.uk) and we make no distinction between "officially" diagnosed and self-identified.
My own diagnosis says I am on “the Autistic Spectrum functioning at the level of Residual Asperger's Syndrome” I find that a mouthful! I even had to visualise a house to think of the word residence to remind me of the word residual because I found the idea ridiculous.
I just say I'm autistic. There is nothing residual about my autism I’m just aware of it and therefore better able to understand and manage myself.
I'm not sure how the clinician thinks you are "on the spectrum" and not autistic - other than everyone is on the neurodiversity spectrum, but not everyone is neurodivergent.

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Sashina
17/4/2018 03:38:35 pm

Thanks Caroline
I wonder too what 'residual' means... There's definitely a conflict of sorts between the lack of a clinical diagnosis and scoring fairly highly in a number of tests. I suspect it just means I work harder to 'overcome' (!) it, which is tiring in itself. It does feel as though the testing itself is subjective to a degree - so many factors dictate how you present at the moment of the diagnosis.Thanks for prompting me to investigate further.
Sashina

Planet Autism
7/6/2018 02:49:52 pm

"residually autistic" Ahahahaha! You couldn't make it up Caroline could you. They have so much to learn about masking. Autism is far more about the internal lived experience than what is presented outwardly.

Planet Autism
7/6/2018 02:48:50 pm

Sashina were your assessments NHS or private? If NHS then go private because the NHS has an agenda not to diagnose and especially as the 2nd clinician said you are on the spectrum. NHS competitions often seem to be less thorough and competent than private ones also, you are much more likely to be diagnosed privately.

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Planet Autism
9/6/2018 09:09:09 pm

*competitions* deary me, I must have had one of those moments where I was listening to something and typed what I heard! Of course it was meant to say *assessments*!

S
9/9/2018 03:43:33 am

By the same token, if diagnosis can be sought through the NHS, but is reportedly, less likely to result in a diagnosis than the paid for route, surely that’s undermining diagnostic process. Possibly calling into question the status of those diagnosed privately?

Lee Henty
5/6/2018 08:28:33 am

I find it odd that the people who diagnose Autism and act as the gatekeeers, are very rarely themselves Autistic. The NT's control the world which we have to make do with.

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Caroline Hearst
12/6/2018 07:46:12 am

Hmm, the irony is Lee from the small sample I've met, I'd say many *are* autistic its just that they are not necessarily aware of it (or if they are they're very much in the closet)

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S
9/9/2018 03:53:03 am

By the same token, heart conditions should be determined by people with heart conditions, diabetes by diabetics, bipolar by those with bipolar. It doesn’t feel like a metric that’s adds value or credibility to the diagnosis process.

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Karen Gray
5/6/2018 11:14:28 am

Exactly.

I spotted the “I’m not autistic” comment too !

I’m particularly bothered by stereotypes amongst supposedly trained clinicians.
The NHS failed to diagnose me twice using ADOS.

I am an educated competent professional. They used stereotypes such as eye contact and sociability to dismiss my traits and coping mechanisms. They didn’t explore the feelings behind behaviours of how I think.

In between, I saw an expert in diagnosising women (privately) and she had no doubts that I’m autistic.

The NHS didn’t even discuss her report with me !

After much angst and lots of feeling like a fraud, 2 years on, now aged 45 I am still spotting new things each week which I realise are about masking or learnt behaviour .

I know someone who aged 16 was told because she goes to drama lessons and has a good imagination she can’t be autistic. Her stimming outside the appointment was ignored.

She’s still wondering whether to complain and seek a second opinion.

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Planet Autism
7/6/2018 02:52:43 pm

Your 16yo acquaintance should definitely request a 2nd opinion (it's in NICE Guidance to refer for this if the person disagrees with the outcome) and also ensure it's to a centre with specific female expertise. Somewhere like the Lorna Wing Centre.

I would also complain about your own situation, NICE guidance (again) says not to use lack of eye contact etc. as a reason not to diagnose. I've come across your exact situation before. Be interested to know which area this was.

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Karen
12/6/2018 09:15:13 am

It was Leeds

Tony G
9/6/2018 05:08:35 pm

I think NHS psychiatrists who are called upon to diagnose autism are bound to make mistakes if they think autism is nothing but a disability. We (autistics) don't often seek a diagnosis that will get us benefits, but are more likely to want help to get a suitable social and working environment. We need, for example, access to the Equality Act 2010, which "protects people from discrimination in the workplace and in wider society" and recommends "reasonable adjustments" at work for protected people.
I'm happy to know that I AM autistic, and why should I get an NHS diagnosis if they're suspicious of why I want one?

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Joan McDonald
5/6/2018 06:59:24 pm

A very interesting article Caroline. I wonder was the phrase for women excluded from diagnosis in " no man's land" intended as the pun that it is. For not being a man, they find it hard to get a diagnosis.
I didn't see the issue as women bring 'blamed ' for masking - more that clinicians are not adequately trained to spot female autistic presentation.
Your idea that a gay person should have to present to a clinician to be declared gay really highlighted the absurdity of having to go to a clinician who really doesn't ' get autism at all .
You really present the case for people who genuinely want to support autistic thinkers to enable us to create autistic space and community.

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Caroline Hearst
12/6/2018 07:48:55 am

Thanks for your comments Joan. My aim really is to help change the conversation about autism!

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Rosemary Charnock
6/6/2018 08:54:27 pm

I am quite convinced of my autism, which came to light during counseling last year, but as long as it is considered to be a DISorder no way do I want that label. so no seeking a diagnosis. I don`t feel i need for anyone to test me and tell me what I know for sure.

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Planet Autism
7/6/2018 02:46:25 pm

I really like your point:

"whilst they acknowledged that autistic females are under-diagnosed, this was attributed not to the lack of expertise of diagnosticians, but rather blamed on autistic women, because we don’t present like autistic men."

I hadn't thought of it like that before, but you are right. Let's stop saying how difficult it is to diagnose autistic females to let them off the hook! It's well-known females are underdiagnosed and commonly misdiagnosed with BPD etc. Why are they not adjusting the (or creating new) diagnostic tools to allow for recognition of the female presentation (which some males also have)! It's gone on long enough and there is no longer any excuse. A half-hearted NICE mention about females being underdiagnosed and saying the traits might differ, is not enough.

I think Anna the presenter, is extremely unlikely to be autistic as she is so gregarious and people-oriented. Yes, I know some autistics are outgoing, but you can't go on in life that long without struggling in some areas if you are autistic and even if she had struggled before in ignorance, in doing that show I am sure she would have had a lightbulb moment if she was. So I don't see her comment as paradoxical, more trying to point out one trait (which of course is only one of many that would apply to an autistic) that might make some people question if they are. But as a clear non-autistic, it was a very naive comment. You just know...as you rightly said:

"who had been aware that they were different all their lives (a sure pointer towards autism in my book)"

Even if you don't know they WHY you are different.

I don't agree with 'de-medicalising' ASD, I don't think it's necessary. Some people will always be happy to self-identify without putting a formal diagnosis on it and that's fine. Others will present several ASD traits but in fact have another condition that looks a little bit like it. Access to services is largely based around diagnosis, although level of difficulty/need will always come into it. I know there is pretty much zero for adults, but for children it is definitely the case.

There are some biological markers now, even though they are not in mainstream use. Urine and blood for instance. Not to mention brain structural and communication differences picked up on fMRI and MRI. Where noticeable dysmorphology is present clinicians are supposed to refer for genetic testing also.

I don't take the 'medicalisation' of ASD as meaning you are only autistic if a clinician has confirmed it, but that you can only be officially documented as autistic if that is the case. There is a difference. Official documentation says that many adults are undiagnosed and self-identify. However, there is a problem with that, in that it leaves people open to neglect if they request support because they have no proof.

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Karen
9/9/2018 06:18:18 am

Planet Autism
Please don’t equate being gregarious with not being autistic.
That’s an over simplistic understanding of autism .
Many autistics are too friendly too talkative and too enthusiastic .
Not all autistics are introverts .

Think of it like depression- not everyone who is suicidal is hiding in a cupboard - some actively engage with the world to try to manage their depression.

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Planet Autism
10/9/2018 05:11:59 am

@Karen, that's not what I did. I equated not only the *level* of her gregariousness, but also the fact that she had an apparent lack of any autism-related problems to date, with the likelihood of her being NT. Hence I also said "I know some autistics are outgoing" and this is often described as the Active but Odd subtype (Wing).

Karen
10/9/2018 06:17:11 am

Planet Autism
My apologies - yes you did qualify your comment. Thanks for clarifying and sorry for my misunderstanding.

However, I would add that we don’t have any idea what difficulties she has had or not. I certainly wouldn’t want to judge based on so little information.

It took a long time for me to connect my difficulties with autism even after I’d recognised it in a parent and grandparent because I wasn’t as awkward socially as them . I took my love of people and ability to connect with strangers as evidence I was NT.

But , I had been in very accepting circles and hadn’t appreciated how I came across until I was in two new situations at a time where my “foibles” weren’t accommodated.

In fact, I’ve only recently appreciated how many situations made me uncomfortable eg personal space in public settings . I’ve always just felt irritated with other people for being insensitive and assumed everyone felt the same way! So I got on with it and didn’t make a fuss as that was how I’d been brought up.

It’s a long time since I watched the programme but I’ve a vague recollection of several things that made me wonder ......


Caroline Hearst
12/6/2018 08:04:37 am

Thanks for your comments.

Re Anna, I wouldn't claim to know her neurological status, but the point for me was that if it requires a clinician to definitely confirm if someone *is* autistic, surely it also requires a clinician to confirm if they're *not* autistic.

I know quite a few people who I believe to be autistic who despite knowledge about autism and lots of evidence self-identify as "not autistic". The stigma gets in the way I guess.

I also think we have to agree to disagree on the diagnosis/medicalisation issue.I think its important that we acknowledge there is no one autistic viewpoint on any issue, although there are some issues, like preferred language when talking about autistic people, where there is a broad consensus.

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Michelle Keifer
30/6/2018 05:47:32 pm

Loved reading all the comments, i had same thoughts about the channel 4 program. I am now 50 year old female got my diagnoses at 47, took nhs almost a year to give me outcome of assessment. My daughter got her diagnoses 1 year before aged 23 and my son fell short because he is social to extent everyone is his friend can't discriminate, he got diagnoses of ADHD this year aged 29. I am a counsellor and i work almost exclusively with people on spectrum, i like that i can identify with my clients and adapt how counselling is usually used to fit the autistic brain and life experiences. I have just embarked on the PGCE The Diagnoses of Autism and Aspergers Syndrome with the NAS and Sheffield Hallam University. Im glad I found this page as the comments are a good insight to many of the issues around ASC for women especially. I'd like to write more but I have to study :)

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Anjali Nelson
28/8/2018 04:10:10 pm

Thank you, thank you, thank you! I've been on a very slow journey of self-discovery ever since my child's Dx with autism more than a dozen years ago. As a female-identified person of color I have learned to mask as a survival strategy, resulting not surprisingly in much depression and interpersonal struggle. I've already had much experience of the medical community not taking my concerns seriously even when justified, and I've been terrified that if I seek "formal diagnosis" for autism that I'll be dismissed by the so-called experts. Your words are a much needed balm.

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Frank Coles link
6/3/2020 04:02:10 am

I think it’s worth mentioning that the same things that are missed in women in regard to misdiagnosis/no-diagnosis are also prevalent in males. It’s not specifically female just happens more with females.
The general discussions re women and masking resonated with me so much that I sought out a diagnosis at 46.
There are social constructs that autistic males use in much the same way as girls. An autistic lady I know taught me how she uses sport knowledge to navigate male dialogue in the workplace in much the same way she uses celebrity gossip with females.
Many men use sport as a scripted dialogue for example. And the ritualised behaviours and norms of sport participation or watching are very easy to use for camouflage.

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