Preferences:

Diagnosing women and girls with autism

55 replies (Jump to last post)

Pages

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

May 28, 2014 - 6:27pm

Thanks Sara.  I think the desire to fit in can be so strong that even now I can be reluctant to share my life with people, apart from my support workers and family. However my interests are now more mainstream (Psychology, as well as nutrition - the interest in food has never gone away!), and so I don't have to hide them as much as I used to.

I have learnt to mask my AS to a considerable extent. I know what is expected because I have read books and learnt the hard way, but socialising consumes a lot of energy because it involves the intellect. I always have to pat myself on the back after successful social interchanges because I am aware of how far I have come. As a teenager I struggled to maintain conversations at school, but I am a lot better with small talk as an adult, although I prefer gathering facts, and if I could I would talk about food all the time!. But I know that it is important to be reciprocal, and because I want to fit, I try my hardest to follow the rules. Therefore my AS is very subtle on the surface, but deep down it affects me severely.

May 28, 2014 - 6:34pm

Yes - fair points all.  I do worry about further stereotypes being created though, one being the male=aggressive and female=passive one (which I think could have negative effects for both men and women).  Many years ago I heard an Outreach worker talking about autistic boys purely in terms of 'challenging behaviour', even grouping one 'type' as 'chair chuckers'.  The link between autism and violence particularly in the US media is even more concerning.  For all the focus on boys over the decades, many are no nearer to understanding autistic boys/men (and the diverse ways one can be etc.).  Anyway - it is certainly a nuanced issue which needs engagement from all concerned in the field of autism.  Hopefully, it will open up debates about around culture/society (expectations etc.) more generally too though - and am glad gender is getting some focus of late.

AutismAdvocate

October 16, 2014 - 4:46pm

carol peters wrote:

I'm currently working with a little girl (3y old) who has many characteristics of ASD but is extremely passive and we are struggling to find any 'evidence' of rigid behaviours etc. I feel this is because of her passivity (she is led by and copies other children). This means she is unlikely to get a diagnosis in the near future and I worry about the implications of this for her and her family. Any suggestions as to where we should go next??

What you have to bear in mind is that there are often co-morbid conditions with autism, which can affect the overall presentation.  E.g. an ASC child could have ADD or ADHD which might make them less likely to have lasting special interests (can appear as more fickle and less obsessive).  There are many ways an ASC child can be rigid that don't fit the stereotypical expectations.  They could be rigid about how they say things, about how they make decisions, about the type of drawing they do, the type of doll they like, it isn't always obvious and not all ASC children are that rigid - hence it being a spectrum.  This is also why the diagnostic criteria need amending to incorporate female presentation.  All the while girls are being judged against male criteria it will cause confusion amongst professionals.

Read up on the subtypes of autism (Lorna Wing) as you may find her here:

Aloof

Most frequent subtype among the lower functioning. Most high-functioning in this group are a mixture of aloof and passive. Limited language use. Copes with life using autistic routines. Most are recognised in childhood. Independence is difficult to achieve. There may be loneliness and sadness beneath the aloofness. Rain Man is an excellent example of this subgroup.

Passive

Often amiable, gentle, and easily led. Those passive rather than aloof from infancy may fit AS. More likely than the aloof to have had a mainstream education, and their psych skill profiles are less uneven. Social approaches passively accepted (little response or show of feelings). Characteristic autistic egocentricity less obvious in this group than in others. Activities are limited and repetitive, but less so than other autistics. Can react with unexpected anger or distress. Recognition of their autism depends more on observing the absence of the social and creative aspects of normal development than the presence of positive abnormalities. The general amenabilit y is an advantage in work, and they are reliable, but sometimes their passivity and naïvety can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Active-but-odd

Can fall in any of the other groups in early childhood. Some show early developmental course of Kanner's, some show AS. Some have the characteristic picture of higher visuo-spatial abilities, others have better verbal scores (mainly due to wide vocabulary and memory for facts). May be specific learning disorders (e.g., numerical). School placement often difficult. They show social naïvety, odd, persistent approaches to others, and are uncooperative in uninteresting tasks. Diagnosis often missed. Tend to look at people too long and hard. Circumscribed interests in subjects are common.

Stilted

Few, if any clues to the underlying subtle handicap upon first meeting. The features of AS are particularly frequent. Early histories vary. Normal range of ability with some peaks of performance. Polite and conventional. Manage well at work. Sometimes pompous and long-winded style of speech. Problems arise in family relationships, where spontaneity and empathy are required. Poor judgement as to the relative importance of different demands on their time. Characteristically pursue interests to the exclusion of everything and everyone else. May have temper tantrums or aggression if routine broken at home, but are polite at work. Diagnosis very often missed. Most attend mainstream schools. Independence achieved in most cases. This group shades into the eccentric end of normality.y is an advantage in work, and they are reliable, but sometimes their passivity and naïvety can cause great problems. If undiagnosed, parents and teachers may be disappointed they cannot keep a job at the level predicted from their schoolwork.

Active-but-odd

Can fall in any of the other groups in early childhood. Some show early developmental course of Kanner's, some show AS. Some have the characteristic picture of higher visuo-spatial abilities, others have better verbal scores (mainly due to wide vocabulary and memory for facts). May be specific learning disorders (e.g., numerical). School placement often difficult. They show social naïvety, odd, persistent approaches to others, and are uncooperative in uninteresting tasks. Diagnosis often missed. Tend to look at people too long and hard. Circumscribed interests in subjects are common.

Stilted

Few, if any clues to the underlying subtle handicap upon first meeting. The features of AS are particularly frequent. Early histories vary. Normal range of ability with some peaks of performance. Polite and conventional. Manage well at work. Sometimes pompous and long-winded style of speech. Problems arise in family relationships, where spontaneity and empathy are required. Poor judgement as to the relative importance of different demands on their time. Characteristically pursue interests to the exclusion of everything and everyone else. May have temper tantrums or aggression if routine broken at home, but are polite at work. Diagnosis very often missed. Most attend mainstream schools. Independence achieved in most cases. This group shades into the eccentric end of normality.

AutismAdvocate

October 16, 2014 - 4:48pm

carol peters wrote:

I'm currently working with a little girl (3y old) who has many characteristics of ASD but is extremely passive and we are struggling to find any 'evidence' of rigid behaviours etc. I feel this is because of her passivity (she is led by and copies other children). This means she is unlikely to get a diagnosis in the near future and I worry about the implications of this for her and her family. Any suggestions as to where we should go next??

Get her referred to the NAS Lorna Wing Centre.  Many clinicians are clueless about female presentation.  NHS NICE Guidelines state that complex cases should be referred onwards for a second opinion.  Leaving her without a diagnosis will, as you say, cause a lot of problems for her and her family.

Lana Grant

February 17, 2015 - 10:54pm

I had a late diagnosis if autism at 38 and I work with children and young peiple

on the spectrum, specialising in women and girls. I am constantly exasperated by the many professionals I work with who question the diagnosis of the girls I work with. They are comparing the presentation of girls with boys and using male biased screening tools. I have six children -2 girls, 4 boys- one son has a diagnosis which was relatively painless to obtain. However, for my daughter - who presents exactly as I did as a child - I struggled to get a diagnosis for her. The main issue was the fact that she made eye contact and was quiet and passive!!

I am about to have my first book published on being pregnant and autistic and I have highlighted the female presentation in my book. I hope that this will be taken on board by medical staff and other professionals who come into contact with our girls in the future.

AutismAdvocate

April 02, 2015 - 6:28pm

Another very vital point to consider, is that ignorance of female presentation of autism means that autistic mothers may be misconstrued by professionals resulting in erroneous child protection concerns and interventions.

April 30, 2015 - 1:30pm

The 'refrigerator mother' phenomenon - explained by genetics. Doh!

AutismAdvocate

April 30, 2015 - 2:43pm

Morwenna, how does that relate to the issue of females with autism?

Pages