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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

Liam Dowling

March 29, 2012 - 2:14pm

How to colleagues address the issue of meeting the needs of female pupils in a special school environment which is overwhelmingly male? We are a 32 place autism specific school with 5 girls. I would be interested to hear what other schools do to address this issue.

zemanski

March 29, 2012 - 3:18pm

I work with university students and am currently supporting equal numbers of young men and women but I think that is because I have been allocated the women on the basis that I have worked with girls and women before and have a good understanding, other colleagues work exclusively with male students.

The subtlety of the female presentation means we should be seeing more girls diagnosed but they are being missed - if diagnosis of girls improves it would redress the balance a bit but the male/female balance is always going to be a problem. I think this is partly because girls do need to be in social communication with other girls (though some prefer to be with boys), as their focus is often on things shared by NT girls - fashion, animals, dolls, etc are often special interests not shared by boys which leaves them excluded in a male dominated setting. Also they tend to be very good at analysing and copying NT behaviours to mask their autism so that they fit in. At the higher cognitive end of the scale there are many young women who resist the label, they do not believe they are any different from their NT peers, often they tell me that their only problem is social anxiety, and only by looking closely at the strategies they have developed in order to fit in can you see the difference. They do not stand out because they stand back and observe closely before interacting and then their interactions are based on quite high level analasys.

I think girls are probably better off in well supported units in very small schoolswhere they can have access to NT peers but I don't think the units that exist are generally supportive enough to meet their needs and most mainstream settings are simply too big.

April 02, 2012 - 4:42pm

Hi Liam and Zemanski,

You maybe interested in a presentation we have by Dr Jacqui Ashton Smith in which she discusses educating girls on the autism spectrum, you can watch the video presentation here

If you find this useful you may also be interested to know that Dr Jacqui Ashton Smith and Dr Judith Gould co wrote a paper on the 'identification and education of girls on the autism spectrum', which you can read here.  

Dr Jacqui Ashton Smith is also going to be giving a seminar in Belfast based on this paper later this month, you can find out more here

I hope that this is helpful

May 28, 2012 - 9:46am

The National Autistic Society organises a conference on the subject of women and girls on the autsim spectrum, it will take place on 16 October in Birmingham, UK.

The event aims to explore further the issues around the possible under-diagnosis of women and girls with autism. Our keynote speaker will be presenting the latest research on this topic and discussing the implications for future research and practice, including prevalence rates, adaptation of diagnostic criteria and differences in presentation.

The conference will also discuss the unique challenges that face women and girls with autism as a minority group within an existing minority. Experts will give insights into a wide range of issues, including education, puberty and sexuality, self-harm and eating disorders. Plus, there will be first-hand accounts from women on spectrum about the difficulties of actually getting diagnosis and day-to-day living, whether diagnosed or undiagnosed.

To find more about this conference, please visit: http://www.autism.org.uk/conferences/women2012

Celia Churchill

September 12, 2012 - 10:06pm

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

 

September 14, 2012 - 10:24am

Hi Celia,

Thanks for your post!

It is really interesting to hear about your experiences. I think you bring up a number of interesting points that highlight the subtleties involved in this area, I'm sure many will associate with these.

You mention that you have found sequential line drawings a good basis of conversation, this particularly interests me and I would be keen to hear more about this.

Thanks

Matthew

Celia Churchill

September 14, 2012 - 5:35pm

I use a process that has some parallels with comic strip.We use plain paper and a few fibre pens and sit around a table so that we can easily share the paper. Together with the young person I construct a snapshot of a day in their life. They choose what we talk about from choice boxes that has features of a follow diagram. They choose  from a very limited menu: eg a box for school or a box for home.Sometimes they will say which box they want to opt for other times they will just indicate.For example if they choose school they would then engage in further closed choices: eg work, people or the building. This leads to further choices until they reach a topic they want to explore eg perhaps a dispute in then classroom or uncertainty around what they had todo in a lesson.We then instigate sequential drawings which reconstruct the particular event they want to discuss frame by frame using stick figures that interact and talking and thinking balloons.Getting responses from girls can be difficult but I find if I just look at the interaction and ask what words need to go in the balloon very often they can tell me although they wouldn't have been able to do so if I had asked the question without support.

Finally I will recount the event verbally back to them to check that this was what was intended and also look for any generalities that arise from the event described and check again with the young person and, with permission, check with the carer.

Last week I used the above method and from this process discovered that the client cold not read faces: the family has been aware that something was wrong but hadn't recognised what as she had other non verbal skills intact.

I hope this all makes sense to you. It is much easier to show than to describe!! Celia Churchill

September 15, 2012 - 5:05pm

Although there has been a dramatic increase in the number of children diagnosed with autism spectrum disorders (ASD) over the past decade, statistics indicate that boys are being referred and identified in far greater numbers than girls (Attwood, 2006; Wagner, 2006).  In fact, referrals for evaluation of boys are approximately ten times higher than for girls (Attwood, 2006). Girls are also diagnosed with autism spectrum disorders at later ages relative to boys (Goin-Kochel, Mackintosh, & Meyers, 2006). This gender “gap” raises serious questions because many female students with ASD are being overlooked and will not receive the appropriate educational supports and services (Wilkinson, 2008).

Why are fewer girls being identified?  Why do parents of girls experience a delay in receiving a diagnosis?  Are there gender differences in the expression of the disorder? Answers to these questions have practical implications in that gender specific variations may have a significant impact on identification practices and the provision of educational services. Although few studies have examined gender differences in the expression of autism spectrum disorders, we do have several tentative explanations for the underdiagnosis and late identification of girls with ASD. They include the following.

  • Social communication and pragmatic deficits may not be readily apparent in girls because of a non-externalizing behavioral profile, passivity, and lack of initiative. Girls who have difficulty making sustained eye contact and appear socially withdrawn may also be perceived as “shy,” “naive,” or “sweet” rather than   having the social impairment associated with an autism spectrum disorder (Wagner, 2006).
  • The diagnosis of another disorder often diverts attention from autism-related symptomatology. In many cases, girls tend to receive unspecified diagnoses such as a learning disability, processing problem, or internalizing disorder. A recent survey of women with Asperger syndrome indicated that most received a diagnosis of anxiety or mood disorder prior being identified with an autism spectrum disorder (Bashe & Kirby, 2005).
  • The perseverative and circumscribed interests of girls with autism spectrum disorders may appear to be age-typical. Girls who are not successful in social relationships and developing friendships might create imaginary friends and elaborate doll play that superficially resembles the neurotypical girl (Attwood, 2006).
  • Although Students with ASD are more likely to be the target of bullying than typical peers, this may not be recognized in girls due to gender differences in preferred modes of aggression. For example, girls may use covert verbal, social, and psychological forms of aggression while boys tend to rely on confrontational and direct modes of bullying (Besag, 2006). As a result, the more subtle nature of relational and indirect aggression (social exclusion and rejection) used by girls may be taken less seriously than the more obvious, direct aggression exhibited by boys.
  • Although girls may appear less symptomatic than boys, the genders do share similar profiles. Research suggests that when IQ is controlled, the main gender difference is a higher frequency of idiosyncratic and unusual visual interests and lower levels of appropriate play in males compared to females (Lord, Schopler, & Nevicki, 1982). As a result, the behavior and educational needs of boys are much more difficult to ignore and are frequently seen by teachers and parents as being more urgent, further contributing to a referral bias (Wilkinson, 2010).
  •  Over reliance on the male model with regard to diagnostic criteria might contribute to a gender “bias” and underdiagnosis of girls (Kopp & Gillberg, 1992; Nyden et al., 2000). Clinical instruments also tend to exclude symptoms and behaviors that may be more typical of females with ASD.

If girls do process language and social information differently than boys, then clinical and educational interventions based largely on research with boys may be inappropriate (Wilkinson, 2008). If gender specific variations do exist, then the predictive validity of the diagnosis and developmental course may well differ between the sexes. Meanwhile, educators and school personnel should question the presence of an ASD in girls referred for internalizing disorders such as anxiety or depression. Best practice recommends that when a girl presents with a combination of social immaturity, restricted interests, limited eye gaze, repetitive behaviors, social isolation, and is viewed as “unusual” or “odd” by parents, teachers and peers, the possibility of an ASD should be given consideration (Wagner, 2006; Wilkinson, 2010).

 

Reference List is available and supplied upon request - http://bestpracticeautism.com

Wilkinson, L. A. (2010). A best practice guide to assessment and intervention for autism and Asperger syndrome in schools. London: Jessica Kingsley Publishers.

 

 

zemanski

September 17, 2012 - 9:24am

I spoke to my daughter's new practice manager - someone who is not only a GP but also has worked for CAMHS - about my daughter before she met her.

I listed her diagnoses:

Dyslexia, IBS, gender dysphoria, synaesthesia, DCD, pain amplification, circulation problems, extensive sensory issues, social and general anxiety.............

I told her that I thought she was on the spectrum but that, at 16, it was subtle, I explained how she analyses everything and learns by watching others - she agreed it did sound like an ASC.

Then she met my daughter - her response? "SHE MAKES EYE CONTACT"

 

 

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