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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

zemanski

September 17, 2012 - 10:01am

Language development in males is focused in the left brain with fewer connections to the right brain than in women.

In women both sides of the brain are used and the connections to the emotional/emapthy areas are much stronger making female access to emotional information much better than men's access in the neurotypical brain.

The connections between the 2 hemispheres are physically more robust in a woman and there are more of them implying that it would be more difficult for something to interfer with the social and emotional language development in women than in men. It would also suggest that there may be greater plasticity in the female brain and the ability to adapt to a condition impacting on brain structure might be better.

My experience, working with extremely able young adults, is that by the time they reach their late teens women have developed excellent masking strategies and, for the most part, their language skills across most areas are well developed and it is hard to spot the subtle clues that it did not develop typically. It would be much easier I think with children.

If we remember that ASC girls learn by observation and analysis and focus on the emotional and social world of their peers (in a way that boys do not), it seems to make sense that they will have emulated the female emotional vocabulary along with everything else. In looking at their understanding of that vocabulary and the connected emotions you can see the differences quite clearly but you need to know how to plumb the depths and keep them talking about things they usually would rather avoid. I usually find that leaving it till they bring up some issue that challenges their understanding and start asking about how they should analyse a particular emotional scenario is the best method of confirming the language differences when working with young women. But I do not diagnose, I support,  so I have much more time to get to know the people I'm working with and they already have diagnosis so I know the language patterns will be atypical, I don't have to figure it out for myself, just be aware enough to pick it up and offer the help they need when they need it.

September 18, 2012 - 11:55am

Hi Celia,

Many thanks for your reply.

It sounds really interesting and seems to give you an extra tool to aid the communication process with your clients. An interesting development of the comic strip approach and one that I'm sure others may find useful as well.

Best wishes

Matthew

October 11, 2012 - 2:53pm

The main problem is the ongoing 'male bias' in diagnosis. That is to say, professionals look out for stereotypically 'male' behaviours taken to extreme, not helped by Baron Cohen's Extreme Male Brain hypothesis. For example, the narrow interests that are looked for are those which revolve around objects such as computers, trains or cars. But , due to cultural norms, are more likely to develop interests in people, movie stars, and works of fiction.

I was extremely obsessed with the actress Kate Winslet as a teenager, along with child development, but had no interest in computers or gadgets, apart from the purely utilitarian function of researching Winslet. And in my self-advocacy work I come across females who are obsessed with Harry Potter, Shakespeare, shopping etc.

Girls also often encouraged to be more social than boys, and with increased motivation to be social,  girls often seem too social to warrant a diagnosis, but in fact they are confused, extremely anxious, and are merely acting according to a script. The AS is therefore camouflaged beneath an appearance of 'normality'.

October 21, 2012 - 9:22pm

Working in camhs l have seen a gradual increase in the diagnosis of girls, recognising the social differences between girls and boys. One of the fixations which l do feel applies mainly to girls, is the fixated thinking around one friendship, often oblivious to the often negative affect this has on their emotional health. The risk of depressive symptons can increase as the young person reaches mid adolescence, when the one friend decides they cannot sustain the friendship because of the level of control.

Due to the social skills learnt by many girls, l agree some are missed, however, given time spent with a young person through 1-1 assessment,( including speech and language assessment) school observations across several settings, using the social communication questionnaire, which l feel does provide very useful insight and a very thorough developmental and social history, l hope we are getting better.

It is imperative that girls are obviously appropriately diagnosed, but we need to also treat the co-morbid conditions alongside their diagnosis, which can also be masked by their asd diagnosis.

 

 

zemanski

October 27, 2012 - 3:18pm

One of the main problems though is the male bias in the diagnostic tools - the ADOS is particularly bad this way and used by most CAMHS across the country

November 02, 2012 - 11:16am

Yep - there has been a 'male bias' ever since the work of Kanner and Asperger (who were working with boys and thus their theories reflected this).

November 27, 2012 - 1:48pm

Celia Churchill wrote:

When assessing girls for ASC I look for the triad and sensory issues but expect presentation to be different. In the last month I have assessed at least 6 girls and so I thought it would be useful to give some general feedback with regard to adolescent girls.

The young female client with suspected ASC  is much more likely to appear superficially sociable, but often for survival they need a "social guide " to get by: mum often fulfills this role, who  may be completely engaged in managing this young person to the detriment of other family members.Use of a tolerant peer who will model what is required also occurs with  the ASC client following a split second later. Copying may occur on the playground or  in the classroom and may initally look like a slow but independent response.Discussion with family will often reveal, the young client is often copying and also will constantly be uncertain of what is going to happen next.They may or may not voice their uncertainty but will show it through anxiety.

ASC adolescent girls hate being the centre of attention, appear unduly passive in a social setting: they often rely on a younger companion for company and often let the younger child lead.

When assessing in a school context the social communication difficultes can be missed especially if the young person is in a familiar setting : it would be important to observe acrosss a of  range settings.ie lessons where the child is less comfortable as well as unstructured time focussing on the client's social communication inputs and outputs  in relation to peers and adults.

A speech and language in depth assessment provides a good basis for understanding 

non-verbal skills, comprehension and patterns of difficulty with expressive langauge.

I have also found the use of sequential line drawings as a basis of conversation with the young person a great way of understanding their world and it is often the young person themselves who explains the need to follow even the simplist of activites.

Typically schools will say the young person is coping and the parent is over protective: in reality the young person is often exhausted from the effort of keeping up with peers at the end of the school day and frustration is expressed often through outbursts and harm to others in family  or self.

With regard to empathy: although girls have some idea of other peoples' thoughts and feelings they don't really make  the appropriate judgements in terms of engaging with someone else's emotions: to join someone in their distress rather than judging how to be supportive seems to be a frequent occurrence.

Home life is often controlled by the ASC client -with parents working to prevent outbursts they find themselves unable to implement boundaries. Depression and anxiety and denial of difficulty are often presen with teh ASC client. With older adolescents coping with school gets more difficult and some will become school refusers.

This is my first contribution so please let me know if this is helpful - I could expand more if anyone wants more detail but this is the "map " for my adolescent girls. Celia Churchill

 

zemanski

November 27, 2012 - 4:47pm

This is exactly how my daughter (16) presents -the analysing and copying; the reliance on non-peer friends -usually adults or young people, mostly boys, slightly older than herself; the manipulation of home life so that the focus is on keeping her happy - she uses dumping emotional traumas rather than meltdowns;  the becoming distressed at other people's distress and not knowing how to respond - she will avoid a friend rather than try to support them although when she understands what support to give she can do it well so this doesn't show for more straightforward situations such as when a friend is ill; frustration is expressed as self-harm and emotional breakdown - the emotional response can be over or hidden within minutes if she moves into another setting and is almost never shown to anyone outside the family. She came very close to being a school refuser last year but we managed to keep her on track, this year she is in a residential setting and seems more relaxed both socially and, except at the weekends when she is home and lets everything out again, emotionally, although there have been a couple of incidents in school. She throws her all into presenting as competent in school and takes an active role in school life (academically and socially) but is absolutely exhausted at the end of the day/week - exacerbated, of course, by her physical motor control problems, dyslexia and her pain amplification and significant sensory processing issues. Anxiety, depression and denial of difficulties are also present as is an intense fear of "rocking the boat" or appearing different.

The last time I spoke to a professional about her they agreed she sounded like she might be on the spectrum, especially with her list of comorbids which also include IBS, eating and sleep issues, and gender dysphoria, but when they met her their response was, "but she makes eye contact!"

- her brother has diagnosis and I have had non-clinical assessment so we are well aware that she is probably on the spectrum and I use ASC based strategies to support her fairly effectively but until someone who can see the wider picture, like you or Judith, meets her it is unlikely she will be diagnosed.

I work with university students and both the women I work with are excellent maskers and if you can't see beyond the surface you really can't tell with either of them. Dig a little deeper and the analytic approach to relationships becomes apparent and I find a subtle form of rigidity present in the way they think and in how they understand how others think - not exactly the black and white thinking often associated with men on the spectrum but similar.

 

November 27, 2012 - 10:03pm

This is clearly frustrating as many people on the spectrum show eye contact and this should not be used as an indicator. Quality of eye contact  ability to initiate regulate and end eye contact with another is relevant alongside obviously other communicative behaviours.

Girls as we know can pick up the behaviours of others well and therefore unless people spend time across settings social interaction can often be  misinterpreted as "not a difficulty", yet to that young person it is exhausting to constantly be considering how to respond to avoid struggles with social integration being evident.  

zemanski

November 27, 2012 - 11:27pm

The irony is that my son also makes eye contact - but his is over-intense.

One of my colleagues can always tell when the gaze is learned rather than totally natural but I can't. I think I'm so used to people with atypical eye contact that I simply don't see it most of the time so it comes as a shock when someone else uses it as a reason not to diagnose.

Next year eye contact will only be one of several indicators of a core aspect of an ASC and the criteria will be "abnormalities", not "lack" as so many people assume the criteria currently state. The way it was written in the draft, I'm not even certain a person has to have atypical eye contact at all - just enough of that set of indicators to be clear they meet the criteria for that aspect:

"2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated-verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures." DSM V draft

If that's the case then this bit of the new DSM V may actually help with the diagnosis of girls as one of the factors has always been that they are much better at eye contact than the boys - by the time they reach young adulthood the gender difference in gaze is even more marked.

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