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Diagnosing women and girls with autism

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Women and girls on the autism spectrum may be missed by professionals due to the differences in how autism presents in women and girls. In the Knowlege section, there's a fascinating talk on 'diagnosing women and girls' on the autism spectrum, given by Dr Judith Gould, Director of the Lorna Wing Centre for autism and expert in this area.

Have you had experience of diagnosing women and girls? What are the key issues to consider? How can we improve the current situation? Share your thoughts and ideas here!

Edited on February 23, 2017 - 9:20am

June 30, 2013 - 3:13pm

The problem isn't just one of diagnosis, but of accessing services. We were lucky, as a teacher of students with ASD - I identified my daughter's difficulties early - and within 6 months of going to see the GP she had a diagnosis of Asperger's Syndrome. She was only 3 at the time. The problem was not diagnosis, but that her profile did not meet the requirements for accessing services. Academically she was an is very able, in class she is compliant to the point of obsession - the fact that she internalised her stress to the point that she was physically sick every night before going to her mainstream nursery - was irrelevent - there was no 'box' to tick for a child that was academically above her age and was not disrupting the behaviour of others. Referrals to clinical psycholgy, speech therapy and occupational therapy led to similar blank walls. We left with kind words and lists of her strengths and weaknesses, but no-one had any constructive advice as to interventions or strategies we could put in place to help her. Many admitted that on their caseloads the youngest girls with Asperger's they had met were over 9 years old, a far cry from our then 3 year old. Three years on she has made massive progress; we pay for her to go to an independant school - class size of eight - and I've read everything out there on girls and ASD. But we were the lucky ones. ASD is my field, and I was lost. For parents who do not know the field we must concentrate on ensuring that the profiles required to access services are changed, and that girls and their parents are not left post diagnosis with no-one to turn to for help and advice. 

zemanski

June 30, 2013 - 5:32pm

This is not exclusive to girls, I had the same with my son - highly academic and well behaved in school but miserable in himself and then the behaviour issues coming out at home when he couldn't cope. He didn't meet the criteria for support until the stress built up to the level where his reactive behaviours had to spill over into his school life. Primary did their best and worked with me but high school was incalcitrent even under the advice of the ASC response team (which they largely ignored until we threatened leagal action by which time it was too late).

Eventually he had to leave mainstream and, as there was no specialist provision suitable for him (couldn't cope with his academic profile), and there wasn't a private school that would take him either by that point, he ended up on a part time education through the home and hospital teaching service. The LEA tried to back out as the H&HTS isn't designed for long term provision but I managed to get it written into his statement. They were brilliant but he was on part time for 6 years, right through his GCSEs and A levels - legally he should have had a full time education but I couldn't quite get them to agree to that and he was finally happy and thriving so we stuck with it.

Just now we're struggling with university and their inability to conceive of someone as able as he is having to have support with things they think are part and parcel of being a student/young person and refusing to make adjustments or have awareness training in spite of advice from specialists (I'm one of their specialists though I only advise as a parent where my son is concerned and don't work with his department at all). We've had lecturers put in formal complaints because, having severe prosopagnosia, he doesn't recognise them in the corridor and they think he's being rude....

Diagnosis is not the only problem for any of our young people, the inability of the general population to access the autistic imagination means that they can't see the need for support and adjustments even when it is glaringly obvious things are going wrong regardless of gender. And standardised curricula mean that it is not possible for most educators to think outside the box without help - in an independent school with small classes there is a better chance and you are fortunate to have found the right place for your daughter but I've seen ASC kids fail in those settings too.

July 01, 2013 - 7:17am

You are right of course, it is certainly not unique to girls. In the EBD setting where I work we see many students similar to your son, who mainstream have failed. I think what compounds it with girls is the difficulty to find others either professionals or parents who have similar experiences and are therefore able to advise. It is not just the lack of services but a lack of others that make them particularly isolated.

zemanski

July 01, 2013 - 11:32am

Yes it is difficult to find others for your daughter to relate to, but, actually, most ASC girls seem to prefer the company of NT kids - many actually prefer the company of boys.

There's a lot more advice out there now on girls than there was when my daughter was starting out on this path though, there was nothing, barely a mention even in a Tony Attwood book, now there are whole books written and professionals like Judith Gould who really do take an interest and know what they are talking about. Given that if my son had been born 20 years earlier he would have been institutionalised and probably drugged for life I think things might be frustrating but they are getting better. We have come a very long way in the last few decades but there is still a long way to go. Getting our girls actually diagnosed in the first place is the hurdle we have to start with....

if more of our girls were diagnosed then maybe your daughter would not be so alone?

November 14, 2013 - 3:48pm

Hi all

You may be interested in some research by University College London which suggests that girls with autism are less likely to be diagnosed because they are better at masking some of the traits. Details of the article are in the Network Autism News section or you can download the actual article (only until 26th November) here .

Thanks,

Chris

May 25, 2014 - 9:55am

I am female, and received  my diagnosis of AS late, age 21. I am now 26 years old.

I had the classic intense and restricted interests, but they were not the stereotypical ones that are based on the male profile. For example, I was obsessed with food all the way through childhood (not over eating, but memorising the contents of lunchboxes and supermarket displays, playing with food, talking about food, etc.), then the human body, followed by the Titanic film, which led to a major interest in the actress Kate Winslet - this last one lasted 8 years, and a splinter interest in babies developed after Winslet had a child. I read parenting magazines through my teens, and listened to nursery rhymes obsessively. But I kept the interests secret at school - my presentation was quite passive.  All I could think about was Kate Winslet!

Yes, I can also make eye contact, but I don't get any information from the eyes. Eye contact is also distracting, and only make eye contact because it had been drummed into me that this is what you need to do to fit in.

May 27, 2014 - 8:16am

Passivity is often misconstrued by people leading to girls and women not being diagnosed. the role of masking or consciously avoiding sharing your interests within the school environment is often a protective factor  for many. Thankyou for sharing some of your expereinces.  l think it demonstrates the difficulty agencies have when considering a possible diagnosis as in the role of observer many professionals dont recognise or question the passive individual or find an  alternative explanation.

Frequently parents will describe their daughter's presentation to me that indicates strongly that their daughter has AS, yet education dispute the findings because as we know girls are able to find a way to be alongside others and therefore nothing particular is noticed. Yet spending time can pick up the subleties and support can be offered.

Whatever you have chosen to do in life l hope it is possible to share your interests at times and not feel you have to pretend.

May 27, 2014 - 8:55am

As a passive natured autistic man who went 'undetected' (in terms of autism anyway) until his mid-30's - I find much of what is written on this subject to be highly generalised and stereotypical - including that by Tony Attwood and some of what Judy Gould has written.  Gendered identities are more cultural than biological and yet there has been zero decent research into this area from what I have seen.  Much of what is being said is clinical opinion and nothing else.  If we listen to only professionals about differences, those men who present similarly are possibly going to be even less likely to be 'detected' than before.

May 28, 2014 - 6:16pm

Some good points there Damian, and I think along those lines myself. It is true that not all men display the sterotypical male profile, but I think that cultural expectations can shape people's perceptions to a significant extent. Women with AS have historically been the worst affected in terms of missed diagnosis due to a different profile (due to social conditioning, etc.), but we really need to understand the varied nature of AS regardless of gender. Not all people with AS are trainspotters and computer obsessives, regardless of gender.

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