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Features / Webinars

The female autism conundrum

11 March 2015
The Presenters
Presenter

David Skuse

Professor, University College London

Presenter

William Mandy

Senior Lecturer, University College London

On 11 March, David Skuse and William Mandy presented evidence to support the notion that the tools available for diagnosing girls with autism show an inherent gender bias. They also shared interviews with a former patient to provide specific examples of the ideas they discussed.

Skuse is professor of behavioral and brain sciences at University College London, and Mandy, his colleague and frequent collaborator, is senior lecturer of clinical psychology.

Skuse and Mandy are interested in exploring and refining the current conventional definitions of autism — specifically how it manifests itself in girls. They argue that the apparent gender gap often reported in autism is overblown due to fundamental flaws in the way autism is diagnosed.

You can watch a complete replay of the webinar above.

Use the comments section below to submit questions we didn’t have time to discuss during the Q&A session or to pose follow-up questions for Skuse and Mandy.

Press Policy
The Spectrum Webinar Series aims to facilitate the free exchange of ideas among autism researchers, including discussion of published and unpublished research, hypotheses and results. Members of the press may report information presented during a Spectrum webinar only if that material has already been published elsewhere or they have first obtained express written consent from the presenter.

About Webinars
Presentations by leading experts that showcase new findings, useful techniques and emerging topics in autism research. We invite questions before and during the presentations in the Comments section.
  • Mark Carew

    I suspect that there may be useful evidence from a forensic evaluation of diagnosis statistics. Gender bias may be further compounded by gender specific neuro-developmental phasing differences rather than genetic phenotype, which thus masks simple genetic marker. The male brain is of course different in its biases, however the female brain retains the entire capacity and capability (which the male does not). Thus its (female) habit may or may not perform as need is called. The Female autistic may naturally be able to adapt due to those early developmental phasing differences which give rise to a multi-channel brain. Of course all gender linked genes are environmentally tested in the male offspring, survivor carriers will hence express in a portion of descendent female offspring. The simple stats will inevitably blurr. Thank you for this chance to hear your work, M

    • Anne

      Hi Mark
      I’m having difficulty understanding this section of your comment:
      ‘…Gender bias may be further compounded by gender specific neuro-developmental phasing differences rather than genetic phenotype, which thus masks simple genetic marker. The male brain is of course different in its biases, however the female brain retains the entire capacity and capability (which the male does not)….’
      Are you able to rephrase it more simply please? I’m a woman who was diagnosed with AS in 2012 and am attempting to complete a masters by coursework and next semester I will review the current literature on the female profile of Autism.
      Regards,
      Anne

  • ES

    Is this live only, or would I be able to log in to watch after I get out of work (4PM Eastern time)?

    • gregboustead

      ES,

      Yes, a complete replay of the webinar will be posted here within 24 hours of the presentation.

      Greg Boustead
      SFARI.org, community manager

      • AA MacKenzie

        That’s brilliant! Thanks for this, Greg. You see, I’m at work when your webinar will air so my only option is to follow it post-production.

  • Rebecca Hyder

    I followed links to download the Ready Talk app to my iphone but it asked for a conference phone number in addition to a code. We’ve been given the code but what about the phone number? Thanks.

    • gregboustead

      Rebecca,

      Not to worry. At the webinar start time on March 11, the audio will stream from your computer or device once you log-in to the session with the access code above. There’s no call-in number needed.

      Greg Boustead
      SFARI.org, community manager

      • Anne

        P. S. I’m glad this is being recorded Greg, since we are in Melbourne, Victoria (Australia), it will be taking place at 3:00 AM Next Day.

  • RA Jensen

    I hope the presenters will discuss Kopp Gillberg’s AASQ-Rev and ASSQ-Girls.

    http://www.ncbi.nlm.nih.gov/pubmed/21664105

    We wanted to develop and validate an extension of the Autism Spectrum Screening Questionnaire (ASSQ)-the ASSQ Revised Extended Version (ASSQ-REV)–for better capturing the female phenotype of autism spectrum disorders (ASD). Clinic girls and Clinic boys, most of whom with ASD and/or attention-deficit/hyperactivity disorder (ADHD), and Community girls without a clinical diagnosis of any kind of neuropsychiatric disorder were compared on the results of the parent-rated ASSQ and on a new set of items (ASSQ-GIRL). The ASSQ-REV discriminated well between cases and non-cases. Certain single ASSQ-GIRL items were much more typical of girls than of boys with ASD. The most striking of these were “avoids demands”, “very determined”, “careless with physical appearance and dress” and “interacts mostly with younger children”. The issue of whether or not there is a gender-specific ASD for phenotype is discussed.

    • AA MacKenzie

      Thanks for that interesting link and your equally fascinating comment, RA!

  • Ann davies-brown

    That’s very interesting RA … My daughter was dxd at The Maudsley at age 19 … Part of the thorough assessment was a memory test which was very male biased … But I largely disagree with the appearance part as glamour I s one of my daughters special interests.

    • Anne

      Hi Ann
      You may be interested in some of the research supervised by Dr Mark Stokes at Deakin University on girls and dress, presented at APAC 2013.
      Regards,
      Anne

    • Planet Autism

      Myself and my two daughters are all at the high-functioning end of the autistic spectrum. We all like fashion, make-up, perfume and jewellery and I have collections of beauty gadgets…so I agree that the “careless about physical appearance and dress” comment is incorrect and is a sweeping generalisation. I know some females with autism can be like that, but I suspect at least some of those may be those with gender issues. I also know of another local family of ASC mum and daughter who both like make-up, hair stuff and clothes.

  • RA Jensen

    Thanks Ann, What Kopp and Gillberg were stating is that “careless with physical appearance and dress” is found more frequesntly in girls than boys but by no means is present in all girls. My daughter was diagnosed with PDD/NOS at age four and had no interest in fashion. Thanks to her public school spec ed program and excellent speech and language therapists at the school, her diagnoss flew out the window by 3rd grade and she has had a ‘normal’ outcome. I’ll be listening to the presenters and what ideas they may have to developing new screening tools items that may better identify undiagnosed girls who lose any chance at better treatment programs.

    • Anne

      Hi
      I’m only guessing, but as an adult female with Asperger’s Syndrome (diagnosed in my late 40’s), and through what I’ve picked up via my post grad studies, I suspect you will discover that if your daughter was accurately diagnosed in the first place, she may have simply learnt to mask her symptoms and to develop her own strategies for coping with any anxiety caused by navigating social situations. The support of her spec ed program and speech-language therapists will have definitely made a huge difference too, to her ability to communicate and with other specific issues pertaining to her individual learning profile. Many females fly under the radar, as it looks like we are coping because we learn to mimic those around us and hide the symptoms when we are not, which is often done subconsciously. Then – as in my case – we are diagnosed when we are older, with depression/anxiety, because adequate life skills have not been mastered, which are specific to our needs. Some superficial skills are understood, but only to a certain level and my mother focused on helping with social skills, thinking that I was ‘shy’ like she had been, as had her own mother.
      Our son who was diagnosed with PDD-NOS, settled down at around Grade 3 – Grade 4 and his Grade 5 teacher now speaks about how well behaved he is at school. So part of his issues experienced earlier may have arisen due to lack of maturity and other stress factors. He has had intervention with speech-language therapists and an occupational therapist, as well as psychologists, which is ongoing (apart from the OT). He was assessed as being slightly below average with his reading level, which is affected by his processing skills that are slightly below average and his pragmatic language skills are slightly lower than average and sometimes affect his social skills. His anxiety levels are sometimes affected by misunderstandings in social settings. But since PDD-NOS is a ‘mild’ form of autism, it is also easy for boys to go under the radar, as some people put certain ‘inappropriate’ behaviour down to being typical for boys, (which is compounded if other male family members behaved/behave in similar ways at around the same age).
      Autism is a life-long condition.
      Kind regards,
      Anne

      • Planet Autism

        Strongly agree about the masking and losing diagnosis. You cannot undo the fact that you have autism, ever, no matter how well you mask and appear to cope. The brain is wired differently, genes are involved. Masking is extremely hard work and I hate it. After years of doing this, we suffer “Aspie burnout” and those deemed to be “mild” can suffer mental health issues because their difficulties are no less severe than those at the other end of the spectrum, they just look different. http://sfari.org/news-and-opinion/news/2011/people-with-milder-forms-of-autism-struggle-as-adults There is no such thing as mild autism. Look up Bill Nason’s FB page about the misnomer of high and low functioning.

  • Silene

    I’m so happy for this webinary. I’ll be seeing of Brazil. Thanks!!!

  • Nancy Rodo

    My daughter who will be 19 end of this June was finally diagnosed correctly just before she was 16. After years of other “labels” since she was 2- expressive lang delay, anxiety nos, OCD (lining up things), depression, math disability, social anxiety, selective mutism, borderline IQ, auditory processing disorder- all of it became autism after a great new psychiatrist did a massive chart review and observation, who gently said it was always autism. It was verified then by Kennedy Krieger and the same school district team who only labeled her previously with a math disability and anxiety, and speech delay. She is now qualified for services for support for the rest of her life, but what a hard path it was. Lots of therapy, none a social skills group. Lots of medication trials to help solve the “social anxiety” but none really working. Bullying in middle school and difficulty with class material led me to homeschool her through high school. Lots of volunteering, fun co-op classes, and texts that worked at her level made for success. She now takes door to door transportation an hour away to a special college program for those with special needs working on 4 classes for an office/clerical certificate. There is hope, but a diagnosis much earlier would have given her more support. She was the now known typical quiet, reserved, and scared looking girl who was just trying to cope. No behavioral issues in the class marked her as having autism, as this is what boys frequently look like. Plus so many clinicians never put the pieces together. Learn more about her story in a book that she wrote, illustrated, and typed. She presents at conferences, and has sold close to 200 so far. So glad you are having this workshop on what she has lived through. The links to her book on Amazon and her facebook page regarding her journey as a girl with autism.

    http://www.amazon.com/Are-You-Girl-Autism-Too/dp/0615957390
    https://www.facebook.com/girlswithautism

    • Anne

      Thanks Nancy for sharing your daughter’s journey.

  • Sophie

    Hi, just to clarify, if I’m catching it later, after live webinar, when it’s posted here, do I need to register, or will it be on the open Web? Many thanks

  • daniel messinger

    is it possible to get the audio via phone (instead of via the web)?

    • gregboustead

      Daniel – Sorry the audio is only available as a stream at the link above. There is no call-in number.

  • Betsy Johnson

    I am unable to attend the webinar (I have to work) but registered so that I could view it later. Will I be receiving a link to a recording of the webinar? Thank you in advance.

    • gregboustead

      Yes!

  • Cara Vaccarello

    This was a great webinar on a topic that has been coming up in my practice time and time again, however there has been limited discussion about it! Thank you for the great review of literature and unique case vignettes on an intriguing topic!

    Cara Vaccarello
    Clinical Psychologist
    University of Illinois at Chicago

  • Kathy Koenig

    Dr. Skuse and Dr. Mandy are doing groundbreaking work. I’m incredibly grateful to SFARI for making this opportunity available to me and other clinicians, scientists and stakeholders.

    Kathy Koenig
    Director, Initiative for Girls and Women with Autism Spectrum Disorders
    Yale University

    • Planet Autism

      …and it’s vital that clinicians hurry up and catch up! It is a travesty that there are so many undiagnosed autistic girls out there.

  • Alison Singer

    Evan Eichler reported that some girls, called carrier females, showed CNVs that are associated with autism, but expressed no clinical symptoms. Are all these girls really misdiagnosed clinically? Or could there be some real biological (genetic, hormonal, etc) protective factor?

    Alison Singer
    President, Autism Science Foundation

    • Planet Autism

      As an autistic lay person I would strongly bet, no. We just become skilled at masking. That doesn’t equate with coping however. I have plenty of autism genes (have got my full genome). As a woman, don’t fall into the trap of thinking like a man!

  • Dr Lucy Brown-Wright

    Will & David,
    Thank you so much for this webinar. It is terrific to have current thinking shared alongside such compassionate accounts of individual experiences. Excellent to listen to you both. Lucy

  • Tania Marshall

    David, Will and Sfari,

    Thank you for this groundbreaking work which confirms what I have seen in private practice for years. It’s fantastic when research and clinical/anecdotal evidence meets.

    Tania Marshall
    Sunshine Coast Center for Psychology and Autism
    http://www.aspiengirl.com

  • Caroline Pendergast

    I greatly appreciated the webinar today, and it gave me a lot to think about. I applaud this important work and your sharing it. Perhaps I’m splitting hairs, but I’ve found myself wondering about the use of the word “camouflaging” as applied to girls with ASD who can be so difficult to diagnose. My 5 1/2-year-old identical twin girls were fortunately diagnosed early (one autistic, one with ASD) and have been receiving services ever since. Both show empathy and are “tuned in” socially in their ways, and they’re not trying to camouflage anything. They’re just being who they are. I question whether the term “camouflaging” reveals a gender bias, in that we have stereotyped males to show more outward characteristics of autism which society has deemed undesirable. When any individual on the autism spectrum does anything less than the stereotype, can we really consider it camouflaging…especially if it’s before adolescence?

    • Planet Autism

      No. Camouflaging is where we have enough inhibition to realise we are different (at 5.5yo your girls won’t be at that stage yet) and hide our differences to fit in. We mimic others to blend in socially. We pressure ourselves to be like others and be what they would consider acceptable. Therefore I don’t stim in public, if I feel like having a meltdown I restrain it whereas I might let it out at home. I put on a fake social smile in situations where I am supposed to. I mutter niceties if I am introduced because I learned that this is what is expected, even though it makes me angry to have to conform because I am forcing myself to say it even though I don’t want to. There is lots to masking and camouflaging. Girls with autism generally internalise their difficulties and are much more passive in social situations than males.

  • Elaine Clark

    Is there any research on long-term outcomes for females with autism?

    Elaine Clark
    Professor of Educational Psychology
    University of Utah

  • Els Blijd-Hoogewys

    My expericence is that women, whose ASD has been missed before, are more ‘studious’ in therapy, can handle insightfull therapy, and that ‘mourning’ about the diagnosis is more often a topic. After the ASD diagnosis, they are first relieved (finally recognition), and then feel like their identity is in tatters. Therapy is often reconstructing a new moasic of their identity … Do you also have these experiences?

    Els Blijd-Hoogewys
    Head of Clinical Affairs
    INTER-PSY Infant Team & Autism Team, the Netherlands

  • Prefer not to say

    I’d just like to draw attention to a couple of issues;
    One is that there is no recognition that part of what disables autistic people is the neurotypical context. Yet these are identified as problems IN the autistic person. when I first realised I might be autistic it was a huge relief. The fact that my natural way of being is pathologised adds to the self image and self esteem issues. Is there really nothing unique and valued that autistic people add to humanity? I think there are. Why should this be pathologised and even medicalised as a disorder simply because I sm more dependent? We are a social species so individual ability to “function” alone should not mean that I am abnormal. You failed to see the pressure to camouflage is a direct result of a lack of acceptance of natural differences in humans, and instead place the blame entirely on the autistic person’s neurology. I feel I have to pretend to be “normal” because my social acceptance and economics depend on it, because society tells me it is not ok to be me. The language used in this webinar is reinforcing that sense of rejection from society. Just because you have the social advantage and access – because everything is designed for people who think like you – should not mean that you get to define me. Sorry for the rant, but we need to start recognising that the issue here is the social context which demands a very narrow definition of ‘normal’.
    Thank you
    31 ur old autistic woman with a job house and family (I put this here to give you some markets which I know will influence you a tiny bit in taking my view seriously, despite being an angry, alienated autistic)
    I’d appreciate replies, and there will be many other autistic women and girls who would say the same

  • Autistic
  • Shannon

    Diagnosed Aspergers at age 53, including auditory processing disorder. I would love to learn what is in this “webinar”, but I read lips and I also can’t understand accents. Will it ever be transcribed?

    • Planet Autism

      You could play it using speech to text software to transcribe it?

  • RA Jensen

    The webinar does a good job of stating the obvious but offered no solutions. There are a couple of theorys that can be challenged. First, Skuse claimed that hypothetically girls may be more protected than boys against ASD because they have 2X chromosomes while boys have only one X Chromosome. Klinefelter Syndrome boys have very high rates of ASD (Bishop replicated by Moss). Klinefelter Syndrome is caused by a de novo genetic mutation caused by reproductive cell errors (Sperm or egg mutations) At conception Klinefelter Syndrome boys have 2 X chomeomses and 1 Y chromosome producing the genotype XXY. Having two X chromosomes should protect (according to the hypothesis) but has the reverse effect in Klinefelter Syndrome.

    http://www.ncbi.nlm.nih.gov/pubmed/24139812

    The South Korea study has been challenged by many and has never been replicated. The study did not include accepted diagnostic tools (DSM-V, ICD-10) instead relied solely on screening tools.

    • Planet Autism

      Accepted diagnostic tools are only the best people have to work with based on the available research. Research is solely gender biased in the case of ASC. The ADOS-2 is only 77% clinically reliable in “high-functioning” individuals and my eldest child was not diagnosed because she missed the score by 2-3 points and had to be diagnosed by a second opinion during which they couldn’t use the ADOS because she’d already had it, or any other clinical tools, by observation, interviews and using the useless ADOS results as a basis.

  • Tania Marshall

    Dear Shannon,

    Whilst I did not transcribe the entire webinar word for word, I do have a comprehensive summary here for people who would rather read about it: https://taniaannmarshall.wordpress.com/2015/03/15/sfari-webinar-summarizing-the-female-autism-conundrum-and-my-thoughts/

    For those interested in highly visual books on the autistic female phenotype, I am AspienGirl: The Unique Characteristics, Traits and Gifts of Young Females on the Autism Spectrum is available in English and now Spanish. The sequel entitled, I am AspienWoman: The Unique Characteristics, Traits and Gifts of Adult Females on the Autism Spectrum has been completed and is now in the editing and review process. Available at http://www.aspiengirl.com and Amazon Thank-you

  • Hannah

    Can anyone suggest any academic articles that are about this topic- preferably from a social science perspective not a medical perspective? Thanks

  • Alice M.

    Hello, I’m from South America and I am extremely happy and grateful for this webinar. I was diagnosed in my 20s with asperger’s syndrome and clinical depression, by a psychiatrist, a psychologist and a neurologist. Since then I have tried to read everything I can about the syndrome. I have always been less feminine compared to normal girls of my age. I realize that this is quite common in some girls with autism or Asperger’s syndrome, I have also noticed that other girls with asperger’s syndrome have hypermobility and little tolerance for physical pain, besides, I have noticed that some of them tend to have iron deficiency in the blood. In an article, I read that eating broccoli seems to help people with autism to feel better. All the information that neuroscientists, doctors and psychologists are discovering about the syndrome makes me feel fascinated and hopeful.

    David Skuse, William Mandy, SFARI, thank you very much for this webinar!.

  • Cybrarian

    This is fundamentally important. 2 days ago in a bid for Labour Party Leadership, in the UK, one of the candidates uttered the word ‘normal’ in a speech which talked about Disability Payments. That is, that ‘normal people should be given the same level of priority. Given her political remit she is getting thousands of calls for her resignation. I don’t know if you have heard of ‘Boycott Autism Speaks’. It has been running for about for years now and gets better as time goes on. ‘Autism Speaks’, you may know is an organisation which represents the “diagnosing” and “pathologising” of “symptoms” which need to be “corrected”. The organisation makes billions of dollars, using the medical model of autism. None of the Directors, Financiers, Managers and other employees is autistic, ‘Boycott Autism Speaks’ is, and has been, highlighting the inappropriate and downright dangerous practices.

  • Traceylee Harvey

    I am now a 52 year old woman who has not yet been diagnosed properly. By the time i started infant’s i knew 1) never flap your hands in front of anyone, and definately do not rock, children who do those things get taken away, by 6 i found a woman who lived behind us and who i loved to talk to as she was like me, was taken away in a straight jacket as she had a meltdown in public. I remember the first time in reception we went swimming with the school, we were told not to wear anything with laces or zips as we had to get ourselves ready and could not ask for help with undressing, dressing etc. On the morning i got up and my mother had laid out a dress for me to wear, when i told my mom i couldn’t wear it, she informed me that that, did not apply to me as i could do up and undo the zip, and despite my worry’s was made to wear the dress. The zip got stuck half way in the changing room, so as i knew i wasn’t allowed to ask for help i didn’t, i sat in the changing room and waited for the lesson to end and everyone to get ready to go and then just rejoined my class, I still don’t understand that my mom going mad at my teacher was my fault but the teacher treated me badly after that. Yes i have known that i am different since very, very young and have worked hard all my life to hide these things. Why. Because i did not want to be treated as an idiot when in fact most adults i talk to seem to have the interlect of a young child and yet these people have control of my life. I found most are so stupid that they only see what you want them to see, my school reports are full of complaints that i don’t understand phonics or i work too slowly or talk and fidget too much that my hand writting cannot be understood or point blank that i wasn’t trying, and yet i remember working twice as hard as everyone else. Then when i began to suspect what it was that made me different i was a parent and frightened to death that they would take my kids away if they found out what my problems really are. All this came to a head in 2014 and i asked to be tested. Then i lost my dad and was so confused in my grief that i could not tell them what they needed to know, so screwed up my appointment, i was so upset about this and the fact they where trying to fob me off with healthy minds who quite frankly are not worth their pay. I ended up asking to see a pyciatrist but was refused and told i had to go to healthy minds again, so i told them if i don’t get to see someone who is correctly qualified to diagnose me i was going to slit my wrists and yes i would have done. so i finely got to see the right doc but even then i had to attend 3 appointments over a 6 month period before he would even agree to do an AS test, So in march 2015 i was scored at 42 on the spectrum and was signed off from that doc and reffered to colin evans for standardised testing. 14 months on and i am still waiting however i have found online tests which although cannot diagnose can show probability. On these tests i show the following. Autism – very high probability ADHD – High probability, OCD – High probability, Dyslexia – Very high probability, Dyspraxia – very high probability, do i really need to go on because the only thing my problems show is how incompitent the education system and the nhs is. o yeah and i have an iq of 161. So although listening to this it shows light at the end of the tunnel for my granddaughters generation what about my generation and all those thousands of other women like me.

  • Jade Gonzalez

    This webinar has been a summary of my entire life. Thank you for sharing

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