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Autistic women, do we even exist?

27/2/2016

14 Comments

 
Autism and women seems to be one of the bright new shiny things (that actually if you were looking were always there) currently being picked up by the media.  The plus side of this is that we (autistic women) are becoming more visible in our various guises.  This enables more women to recognise their autism, and parents of autistic girls to consider the possibility that perhaps their daughter might be autistic rather than deliberately difficult and awkward.  
It is sometimes suggested there should be special criteria for diagnosing women.  I disagree with this as I would argue that the underlying traits of autism are the same they just manifest differently in different people (and sex is a major difference between people).  Think about colour mixing, if you add yellow to blue you get green, which is very different to the purple you get if you add yellow to red.  However the yellow is still yellow, you just have to be aware that it looks different depending on how much is present and what colour it is being mixed with.

I don’t think medical practitioners should be the gatekeepers for autism any more than they should be the gatekeepers of sexuality. (I believe autism like homosexuality should be removed from diagnostic manuals and re categorised as a naturally occurring part of human diversity.)  Like homosexuality autism can only now be identified by observing behaviour, and this is necessarily contextual and dependant on the knowledge and sensitivity of the observer. Diagnostians have been known to refuse a diagnosis of autism on various spurious grounds my own list includes “he/she looked me in the eye”  (this to me is like telling someone they are not gay because they have flirted with someone of the opposite sex – it demonstrates a very restrictive and stereotyped understanding of the condition as well as ignoring the fact that people are able to behave in ways that do not reflect their inner feelings). My colleague at AutAngel, David Mery found a more extensive list gathered on the Everyday Aspie blog.  

However we are where we are, and currently medical practitioners are the people authorised to diagnose autism, and however much self-diagnosis with peer confirmation might be accepted within the autistic community many people only feel they are “really” have a right to claim their autistic identity after the benedictionof an official diagnosis.
So while autistic women are getting some airing in the media the idea (I would say myth) that there are more autistic men than women does not seem to be challenged, the posited ratio just seems to move a little.  I believe that there are as many autistic women as men, I base this belief in observing the world around me and the people I come across both those identifying and/or diagnosed as autistic and others.  I realise that people can brandish statistics at me that demonstrate I am wrong, but this begs the question of the validity of these statistics (just like you can find a quote in the bible supporting most views, you can gather statistics to show most anything) as they won’t include undiagnosed women and therefore could just be showing up the bias of diagnosticians. Not to mention the fact that due to the low profile of autistic women until recently women were very unlikely to even present for diagnosis.

Interestingly if you are a woman wondering if you might be autistic I think there are better books available to support you in examining this than there are for men in this position.  I have always recommended Women from Another Planet, as it is written by autistic women and unlike individual autobiographies, offers many different perspectives on what autistic lives can look like. This was published in 2003 so these women featured in it are real ground breakers in terms of being aware of their autism and willing and able to share their stories.   It is idiosyncratically organised (as befits something the product of a group of early autistic adaptors working together) and densely packed with a rich variety of experiences and viewpoints.

A more recent book on the subject is Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. This is organised in a more immediately accessible and convenient manner as well as giving diverse women the opportunity to speak to us. Sarah’s own voice comes through with engaging honesty and succeeds in addressing difficult topics with the consideration they deserve while maintaining her light humorous touch.  With the small caveat that Sarah uses the term “women with autism” where I would prefer “autistic women”  I would unreservedly recommend this book and hope that it will help increase the awareness that women are just as likely to be autistic as men. 

In fact it seems to me that there are many couples where both partners are autistic but only the man is diagnosed - because autism is so stigmatised it can be hard to address this but I think that decreasing stigma, and increasing awareness of autistic women will be helpful to these couples and society generally.
14 Comments
Planet Autism link
29/2/2016 10:35:06 am

"It is sometimes suggested there should be special criteria for diagnosing women. I disagree with this as I would argue that the underlying traits of autism are the same they just manifest differently in different people (and sex is a major difference between people)."

I do think there should be female-specific criteria written. Less females have special interests than males (sometimes described as more diffuse) or when they do have them, they are considered more usual interests (clinicians are on the look out for train timetables and dinosaur interests). Also, females often mask so much more than males. Some males apparently have the female presentation too though. It's the masking that is causing so many problems in identification and recognition. Male bias which amounts at times to misogyny in viewing females as neurotic, over-anxious etc. (the silly little woman) means that unless it is written in stone in the diagnostic criteria, clinicians will be far less likely to identify it. The criteria specify presentation/behaviours so if they don't see those or they are masked, they won't believe it. I have personal circumstances which prove this to be true and I am not alone.

Many clinicians treat assessments like a tick-box exercise and rely heavily on diagnostic tools (which although best practice are still optional).

"I believe autism like homosexuality should be removed from diagnostic manuals and re categorised as a naturally occurring part of human diversity"

I strongly disagree with this. We should never of course be considered less. But if my anxiety makes it so difficult for me to make phone calls, attend meetings (and whilst at those meetings struggle to process and have any focus when various people are speaking), makes it impossible for me to drive further than 10 minutes away from home without feeling overwhelmed because of all the traffic and confusing road systems, then it's a deficit. If it makes me unable to understand when people are tricking me or being sarcastic, it's disabling. If it makes me unable to understand deadpan humour and know when I am being mocked, it's disabling. It it makes me misunderstand communications and miss chunks of text in letters and documents and complete important forms wrongly, then it's disabling. If it makes me overwhelmed by normal housework so that the ironing never gets done, it's disabling. If it makes me regularly burn food because I hyperfocus elsewhere whilst it's cooking, it's disabling. I could go on. A lot. That is not a natural difference, it's a disability (even though I am proud of the positive attributes it has given me too). My autistic children's difficulties have been profound (high-functioning). When people cannot function in mainstream society it's disabling. When they suffer phobias, obsessive behaviours which cause detriment to their lives, it's not a difference. When it takes your child 4 hours to download the stress of their school day, that's disabling.

I do also strongly believe that people shouldn't call themselves autistic until they are officially diagnosed. They could use terminology like "self-suspected autistic" but not "self-diagnosed autistic" because diagnosed is a medical term and it implies they are definitely autistic but just haven't got round to getting the bit of paper to rubber stamp it yet. There are other conditions which can superficially look like autism and they could be entirely wrong (BPD is just one) hence a good assessment will be differential to rule out or confirm any other possible conditions. In seeking an identity to explain their struggles they could have latched onto something that is not what they have. I could have a chest pain and diagnose myself with angina or heart attack, when it could be indigestion or a pulled muscle!

I do agree that the gender ratio is equal and have been saying this for some time. Professor Tony Attwood has now finally gone on record to state the same (see my website 2nd video down here http://evolutian.wix.com/planetautism#!autism-research-and-media/c16fm) but people 'self-diagnosing' in some ways undermine those who are genuinely autistic, it becomes a fad and people start saying Asperger's is just a fashion and the latest trendy thing to be diagnosed with, like Sheldon or the stereotypical quirky nerd. Yes, "self-diagnosis" is often on the pathway to official diagnosis, but that isn't saying all people who "self-diagnose" are autistic. I'm in 2 minds as to whether the Broad Autism Phenotype exists, but if it does, some of those people could be BAP (a few traits but not autistic). Or they could just have social anxiety. Or be shy. Or have SPD but still be neurotypical. Or have been a survivor of childhood abuse/trauma. Or just be depressed and confused and looking for an answer. Some people fought hard for recognition of their diagnosis, if half the population is claiming to be autistic (I actually read a comment below a YouTube video

Reply
Planet Autism link
29/2/2016 11:40:00 am

...by someone purporting to be knowledgeable who claimed 50% of the world's population is autistic) then how does that explain why those of us with autism spent their lives knowing 100% that they were different from everyone else around them? You base that on the behaviours, actions and words of other people, finding it strange and anomalous. On hearing what people say and thinking to yourself that you don't think like that at all. On seeing how others (NT's) gossip, manipulate, social climb etc. and finding that entirely alien and confusing. If so many people are autistic (or claiming to be), genuine autistics would not be noticing their differences.

(the above is chopped off my first comment!)

Reply
Karen Isaac link
29/2/2016 07:28:29 pm

I finally got to see a specialist about 5 years ago who said yes I DO have high functioning Autusm BUT because my parents are both dead( I am 58) ,he couldnt actually give me a formal diagnosis.Beacuse he needed to know what I was like as a child,I told him ,but needed to be from them!I have suffered all my life and with OCD ,it was a lightbulb moment when I suddenly realised I had Aspergers......I wasnt mad or stupid after all.It is in the family too my son has it ,my brother and my husband,and poss my two daughters.People say to me....awh but everyone is a bit like that! Erhhhh not like this,the way I feel and am.I agree women cover it up ,my Mother was good at training me to be able to talk to people ,but such a hidden thing inside I am freaking out in social settings .

Reply
Planet Autism
29/2/2016 07:45:40 pm

Karen Isaac, he has misinformed you. I have it in writing from Simon Baron Cohen that lack of childhood history should not be a barrier to diagnosis and it even says in the NHS NICE Guidance CG142 on assessing and diagnosing adults with autism: http://www.nice.org.uk/guidance/cg142/evidence/full-guideline-186587677 See 5.4.7.3 "During a comprehensive assessment, enquire about and assess the following: (one of the bullet points is) early developmental history, where possible" so not mandatory.

You could be 80 and still entitled to receive a diagnosis.

Here is my webpage on autism rights: http://evolutian.wix.com/planetautism#!your-autism-rights/c1t44 and there is plenty of rationale as to why someone wants and needs a diagnosis.

If you want to you should request referral.

Reply
Karen Isaac link
29/2/2016 08:27:50 pm

Thankyou for what you have written.Did find it strange,the thing is it has led to a struggle to get PIP ,as in the actual letter it says he cannot give me a formal diagnosis.In the area I live it is nigh impossible to get a diagnosis at all .Was told the only way is to,go private which I cannot afford as is hundreds,and dont think I should have to really do you!

Reply
Planet Autism
29/2/2016 08:36:54 pm

On my website link, you will see information that there is an agenda not to diagnose people - and why. It's a scandal. But you have rights and you can fight. According to the Autism Act 2009 and the Autism Strategy 2010 you are entitled to a referral. On my website there is a link to the AQ10 screening form which you can take to your GP. It explains everything on that link about what to do. I had the same difficulties with DLA and my children did too, it really makes a difference having a diagnosis. Get help completing the forms as well because I took the questions literally and answered wrongly in places (such as 'does your child have a communication difficulty' so I said no, because she can speak normally. Whereas obviously autism is a communication difficulty and it doesn't mean you can't speak (unless a non-verbal person of course)!

As a quick route, you can challenge the letter so you don't have to start from scratch. Quote the NICE Guidance at him, write back and say it has come to your attention. If there is anyone that knew you as a child, sibling, auntie, uncle etc. they can stand-in for some history. If you also have school reports or employment appraisals with any relevant information in that will be of use. Don't give up!

Reply
Karen Isaac link
29/2/2016 08:41:29 pm

Ok thankyou ,for all your help.I have a local group that I can get help from if necessary ...to fill in the form.😊

Caroline Hearst link
3/3/2016 08:45:44 pm

Thanks for your comments Karen and Planet Autism. To argue that something should not be a medical diagnosis is not the same as saying it can't be disabling. I totally accept that aspects of autism can be disabling, I also strongly believe that sometimes it is the environment that is disabling not the condition itself.

However while there are no known specifc biological markers for autism diagnosis remains subjective, as shown by Karen's story. I don't think we should put our identity in the hands of others with various agendas of their own.

Reply
Planet Autism
3/3/2016 09:02:39 pm

I totally agree with you Caroline that there are definite elements of the social model of disability.

But it doesn't account for all, by any means.

If we were on a planet with only autistics, things might be easier - although in some ways would be harder. Communicating with strangers even if they are autistic can still be terribly difficult.

Hyposensitive autistics would also cause a problem for those of us who are hypersensitive due to sensory seeking for noise etc. Autistics struggling with self-care and hygiene would cause a problem for those with olfactory sensitivity.

Co-morbids like ADHD in some, might also cause a problem for some autistics.

The Passive subtype especially. And then there is the often quite large difference between autistic males as opposed to females. Including the sometimes evidence difficulties with boundaries that could be more pronounced in autistic males than NT males and the difficulty saying no or speaking up in a female might prevent protecting oneself.

What I'm saying is, NT society is the norm, there is no changing that. So even with reasonable adjustments, there will always be difficulties for autistics within it.

Many autistics have sleep difficulties, which can make it stressful having to get up early for school or work. Lack of sleep exacerbates behavioural issues in autistics. There is just so much that is not typical or 'normal' for how the body is supposed to function, for autistics.

I can't see what else other than a diagnosis, in recognition of the difficulties and the fact that the difference exists, could be possible.

I do get that many autistics want to only see it as a difference and sing the positives and praises. I am all for bigging up our talents, and I think overall we can be more intelligent and talented than NTs because of the spiky profile. But I am very concerned at the Steve Silberman et al trying to say autism is just a difference now, because I think there is a sinister undertone to the fact that autism rates are increasing and it's a way to deny it's a disability and not provide services.

A legal person told me last year that there is dispute as to whether Asperger's is a disability. That is scary, because if it becomes not eligible for protection by the DDA 2005 and the EQ 2010, we could be left unprotected by the law in the event of things like employment difficulties or accessing servivces by public bodies etc. We have to understand why they are painting it differently all of a sudden. It isn't always the reason it seems.

Reply
Mary
7/9/2016 11:39:18 am

As far as I am aware I am NT. My daughter was diagnosed with Aspergers at age 16, and refused further professional assistance. The discussion above fits exactly with my experience - my daughter insists she simply be treated as 'different', but I am painfully aware of how 'disabling' her condition can be, particularly in terms of getting social support networks and earning a self-employed living. Because she has 'masked' all her life, my daughter cannot understand how disabling her anxieties are, compared with the NT experience. Hence, her determination that she is solely 'different' and not 'disabled'. I understand how stigmatising a label of disabled can be, but the reality is that she is disabled in certain areas of living (and outstandingly loyal, creative, determined and gifted in others). As her mother, I am greatly relieved that we finally got a diagnosis - if nothing else, at least it helps me support her better.

Reply
Planet Autism
7/9/2016 12:34:57 pm

Hi Mary,

your experience with your daughter sounds similar to the situation I have with my eldest, but with my daughter it's to a more extreme level. I just wrote a blog post about it (I was very hesitant to publish it and sought a neutral opinion before I did so, because of the topic of the post and even though it does not identify my daughter, I felt guilt at posting it. I did so in case it helps others): https://planetautismblog.wordpress.com/2016/09/05/anosognosia-and-autism-a-real-concern/

Reply
Kine Soleng
26/5/2020 06:56:55 am

I read the blog. Its interesting. I can recognise parts of it, but I'd see it more as masking for survival. With PDA maybe being part of the picture. It's a real worry, though.

Reply
CA Jenkins
19/11/2021 11:20:09 pm

A more recent anthology that is well organized and indexed is Spectrum Women: Walking to the Beat of Autism (2018, JKP). Led by women from 6 countries, it includes commentary by Dr. Michelle Garnett.
There is also a support group that came out of the book, Spectrum Women Connect.

Reply
donald86 link
31/8/2022 05:28:57 am

Great Article! Thank you for sharing this is a very informative post, and looking forward to the latest one.

Reply



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