Is Autism Underdiagnosed in Girls and Women?
January 23, 2008 by Kristina Chew, PhD
Filed under Health
ABC’s Nightline is airing a special on girls with autism tonight, on ABC News World News with Charles Gibson at 6:30pm (ET) and on Nightline, Wednesday, January 23, 2008 at 11:35pm (ET/PT). Aspie Dad posts a summary:
…in a surprising twist, correspondent John Donvan and producer Caren Zucker talk to several researchers and psychologists who believe there are actually more girls with autism in the U.S. than diagnosed. Not only may there be many under-diagnosed girls, according to these experts, but some girls with autism may be assigned some other diagnosis. In fact these girls are often being under-diagnosed or diagnosed with something else. The researchers believe that many of the symptoms are being missed, or that they are just more subtle in girls. Nightline takes an in-depth look at how girls and boys are brought up culturally, and how these differences could contribute to a misdiagnosis in girls, resulting in the harsh reality that we just don’t know how many cases of girls with autism really exist.
While it’s been awhile since there was a girl in Charlie’s autism classroom, the more I have learned about autism, the more I have realized how many past and current women I know are very likely on the autism spectrum. There are friends from grad school (some of whom did not get their degrees and seemed more than loathe to leave the security of being in school; some of whom fretted over their inability to finish the requirements for their degrees and hung around, or who struggled at job interviews and moved from one temporary position to the next). There’s the girl from my childhood who refused to wear wool sweaters and to talk in class, who used a video dating service and was always dissatisfied with her job until, after getting downsized and going back to school to become a technical writer, found work she excelled at and that she liked.
And I’m sure there are many more.
Go here to read ABC’s report on autism in girls.
I also know several women who may be on the spectrum. I often wonder if I am undiagnosed, too. If that’s true, it wouldn’t change me, who I am, or what I do.
My mother and daughter are both autistic. I’ll watch.
Warning: the story on ABC’s website has a link to the (completely discredited) Geiers.
I was reading an abstract recently that cited a 3:1 boys to girls rather than the usual 4:1 for autism.
I’ve got some quirks that make me wonder about myself most days. I’ve also got some female family members (my side and hubby’s) who would probably qualify for a diagnosis if they ever sought one.
I saw that! What’s that about—-
Based on the written report, that’s a surprisingly good job from the mainstream media. It definitely clicked with me, especially the part about how when we (girls on the spectrum) do behave in stereotypically autistic ways (i.e. have bad meltdowns) people just think we’re being “hysterical females” or worse, deliberately manipulative “bitches.” I’d really like to see some studies which thoroughly attempt to discern what the true gender ratio is.
No surprise there for me. And it’s not only “bitches” that I’ve heard my whole life. Probably the thing that’s said to me most often is, “Why don’t you tell us what you really think,” in complete sarcasm, followed by my being consistently described as “brusque.” I don’t like people to hug me (except my husband and children). I don’t like people near me. I flinch when someone touches me unexpectedly. I can’t stand tags, clothes around my waist, or things on my head, makeup on my face. I am EXTREMELY sensitive to smells. I have created social algorithms for most social situations and often pick up “tips” to add to them by watching the behavior of others. I engage socially by rote quite a bit, and often, I’m too direct when being oblique is apparently required. I’ve frequently been completely oblivious when someone has been really mad at me about something, unaware that I had offended, and didn’t care that much when I found out. I was a very odd child, friendless through ninth grade, interested in things far outside the realm of interests of my peers. I was mercilessly bullied until I was about 14. I used to have meltdowns that at least *felt* beyond my control in public but have really controlled that significantly as I’ve gotten older (thank goodness).
Hmmmm…any of that sound familiar? Add to that that I’ve been obsessed with Anthony Trollope most of my life and with developmental reproductive biology and endocrinology for about 15 years, and well…I’m also a (somewhat) little professor. Oh, there’s so much more. I try not to dwell on it because it wouldn’t change a darned thing about my life right now to have some kind of definitive diagnosis or label, so I’ve never sought it. But I strongly feel that in our case, the fruit fell very close to the tree.
“studies which thoroughly attempt to discern what the true gender ratio is”——this would definitely be of interest, especially as most seem to think that autism is so much more common in boys/men than in girls/women.
I wonder if there has ever been a study or empirical evidence showing this. I wonder how those people who claim that girls are naturally more sociable, are trained to act more socially and are more able to pass more easily as an explaination can explain that similar ratios have been found in dyslexics and stuttering. If diagnostic substitution is the reason, what are these autistic girls being diagnosed as since it would seem that all developmental disabilities have shown similar ratios?
Off the top of my head, I can count about ten females I’ve known in my lifetime who are on the spectrum. Some friends who went on to get PhD’s and do amazing things (but who are otherwise hard to interpret), some art friends who are understood to be artists, and a couple family members.
Autism is not being under diagnosed, it is being over diagnosed. Since the introduction in the early 1980’s of the new ‘Gold Standard’ DSM-III-R, ICD-10 ADOS, ARI-R and AUT-R diagnostic tools there has been an ‘autism’ epidemic.
These diagnostic tools are all a Chinese Menu of checklists, two from column A, one from column B and one from column C.
What are described as ‘autistic’ type behaviors on closer look are not ‘autistic’ behaviors at all, in the sense they are nonspecific to autism. Take Menu B, language abnormalities. Check off the column if the patient shows no language or or developmental language problems such as pronoun reversal and echolalia. Pronoun reversal and echolalia are also commonly found in schizophrenia, mental retardation even Alzheimer’s disease (as is Theory of Mind deficits and executive function deficits all claimed as ‘autistic type’ behaviors).
The criteria for a PDD are now so vague, ambigous and subjective that orphans who suffer extreme emotional deprivation, neglect and abuse often qualify for a PDD diagnosis because they are found in positive in 8 of 16 items on a checklist defined as ‘autistic’ behaviors.
The new criteria has lost the importance of the core defining feature of ‘autism’ prior to the mid 1990’s, a profound indifference to the existence of others that is most noticeable in the relationship to parents and siblings and other caregivers, during the toddler years from 3 to 5 years of age.
I am always surprised at how many parents describe their ‘autistic’ child as very sociable and loving. As well as how many parents can easily diagnose people and other relatives as being on the spectrum.
You have to decide whether autism is a profound developmental disorder or a personality disorder.
As far as male:female ratio, always a puzzling and unexplainable finding. There is also a 3:1 male female ration in leprosy with just as much controversy and theories trying to explain the phenomena.
Try looking at the diagnostic criteria for Asperger’s, which I agree is different than autism.
My younger daughter clearly has autism. My older daughter who is TAG but has LD and was diagnosed as ADHD. It was suggested earler that she might have Asperger’s in elementary school, but in Junior High it was unclear whether that was correct–in the last couple of years, it has been more and more clear that there are social deficits that are more difficult than can be taken care of by a few social skills classes…and we are back to an asssessment of Asperger’s.
So I agree with RAJ that there doesn’t have to be a 1:1` ratio, but I agree with Professor Myles that aspects can be masked and compensated for. My observation is that such compensation is not always successful, depends on situation, and can be very exhausting to the person.
Completely un-scientific study at my son’s school is 12:1 boys to girls who are more “educationally challenged” to the school systems they come from, not higher or lower functioning.
I was lucky enough to be diagnosed by a clinician who had no problem identifying non-”female” disorders in women (first schizoid personality disorder, later revised to Asperger’s syndrome). I’ve been told more than once that many women with my symptoms would be diagnosed with a constellation of more girly mental ailments–social anxiety, sensory processing disorder, bipolar, etc.–and that if it weren’t for a documented childhood history of AS-like symptoms I would never have gotten the diagnosis. I have also (more than once!) been told that I’m “too pretty” to have AS. I’m really sorry I missed the show. Does anyone know if it’s being re-broadcast online anywhere?
OK, nevermind, I’m an idiot. Click the link, Hala, click the link. Thanks… watching the video now.
“I am always surprised at how many parents describe their ‘autistic’ child as very sociable and loving. As well as how many parents can easily diagnose people and other relatives as being on the spectrum.”
Just because some people want to confine the definition doesn’t mean the definition is therefore more correct within those confines. There’s a difference between being sociable and loving and being successful at socializing and loving. And it’s not because of a “personality disorder.” Just because some people want to build a box around a specific intensity of symptoms or a specific, narrow suite of traits doesn’t somehow make autism diagnoses outside of that box any less real or valid.
People with intellectual disabilities have them to different degrees, and no one argues that one is less valid than the other. People with cancer have it to different degrees or stages, and no one would argue that one is less valid than the other or “overdiagnosed.” People with Down’s syndrome exhibit its associated traits to different degrees, but no one would argue that the milder manifestations of it are somehow not as “valid” or that they were “overdiagnosed.”
Autism doesn’t fit in a box, it can’t be summarized in a media sound byte, and I for one think that it’s about damned time people figured that out. As for “diagnosing” people in their families, sometimes it takes one to know one.
My daughter would not have been diagnosed under as having an autism spectrum disorder 15 years ago but thankfully they recognized that it is a spectrum with varying degrees of disability. I also describe her as loving and social. That is she is loving with people that she trusts and when she wants to how she wants to and she is social in that she wants to be around people and have fiends and interact. That does not mean that she does not have severe social deficits. She does not interact appropriately and struggles to interact with others in an age appropriate way and tends to feel most as ease with very young children or friends of ours who are in theatre and art. We are very involved in community theatre in our area and have found that she is most comfortable around people who tend to be more on the dramatic side. We have been told many times that she is dramatic and quirky but she is a girl. I guarantee that if you saw her have a meltdown most with think what a bratty little girl but when you put the sensory issues with the social deficits and the fact that she has at least 10 meltdowns a week at this point it certainly is not just a over dramatic girl who behaves as a brat. I am grateful that they expanded the diagnosis and she is getting help, and that now they are looking at how many girls fall through that cracks because they want to please and can fake it for short periods of time.
Oh Emily, you described so much of me, especially “I have created social algorithms for most social situations and often pick up “tips” to add to them by watching the behavior of others.” (I replied to another post about how this stresses me out so: http://motherofshrek.blogspot.com/2008/12/body-lanuage.html)
I had a lot of meltdowns when I was a kid but learned how to repress the anxiety, which is slowly hurting me. People always tell me that I don’t have social anxiety because I appear to manage so well. I try to explain that just because I can play the game doesn’t mean it is easy for me. They also don’t realize I stay away when I know I can’t handle it. And when I crash, you do not want to see my house.
If you take a look at Kanner’s paper, you can see that he himself did not define autism so narrowly. Some of his subjects might well receive an Asperger’s diagnosis today, ironically. One of Kanner’s impressive feats (IMHO) is that he was able to recognize strong commonalities between people who superficially appear quite different and had very different levels of impairment. Many psychiatrists wouldn’t have been able to do that, and clearly this is still a struggle for many people today. A lot of people who complain that autism has gotten too broad are actually arguing for a narrower definition than Kanner himself used.
Sarah, that is so interesting. Thank you for pointing it out.
I have been thinking about RAJ’s comment about people diagnosing their family members. I don’t know if he/she was alluding to my comment. I do realize that when I say my mother is autistic most people probably wonder how I came to that conclusion. It’s unusual. If I knew RAJ in real life (presuming he/she is a person and not merely an internet persona generated by someone with a financial interest in quack treatments) I’d be happy to share my documentation. I have more than one would imagine. I think that anyone who sees it would be able to understand that my mother is an almost comically textbook case of Asberger’s. I’m not just using some internet “test” or stereotypes to apply a trendy label to her. I am referring to things written about her since her birth — I come from a family of avid journalists — that are all crystal clear, I think. I have thought and thought about this for years, and don’t see how anyone could come to any other conclusion.
I just wanted to put that out there.
hi, i gave my non-autistic daughter the Sally Ann test and she failed! when i asked her how Sally couldve possibly known Ann moved the ball she said, Sally knows Ann very well. i dont think she is autistic, just a bit quirky maybe from being around her autistic brother.
by the way, my autistic son Ryan Power, is the star of Snack n Drink which is in the MOMA and on youtube. he was also an alien in Waking Life and in another video called Tour of the Capital on youtube in case any of you would like to see a 23 year old autistic boy. i get the feeling your children are much younger.
glad i found this site, ive learned a lot from it. jaymee
Lola has a pdd-nos diagnosis, but without her significant speech delay (and a pushy mom!) I doubt she would have been diagnosed until she was older school. She definitely has social delays – she withdraws in large groups, is slow to warm up to people, and either has limited interest or ability playing with peers – but those things are hard to test in a controlled office setting. She doesn’t have any repetitive/stereotypical behaviors, however – no flapping, spinning, rocking, lining up toys, etc. – and those always seem to be the signs the diagnosticians focus on.
I read an article once that suggested that the autism criteria were written with boys in mind, and unintentionally created a boy-skewed ratio. Boys, for example, tend to have stronger spatial relation skills and tend to focus on processes over relationships. So, they tend to have visual/spatial relation stims (spinning, lining things up, etc) and perseverate over processes. The autistic manifestations of girls, the authors said (with their better verbal skills and focus on people over processes) were harder to notice. Autistic girls would instead perseverate over social constructs (like Emily’s social algorithm), and it was suggested that anorexia (with its OCD-like perseveration with counting calories and controlling food intake) may be an expression of autism in some girls.
@Jaymee,
I am looking up Snack n Drink and Waking Life —thank you! My son is 10 1/2 and getting older by the day— I’m more than glad to read about your son and experiences. Thank you so much and very nice to “meet” you!
Lolasmom, that’s very interesting. “Perseverating over social constructs” is pretty much exactly how I’d describe it.
An edited book about this very issue came out last year (well, December 2006, so a bit more than a year), Asperger’s and Girls. Tony Attwood wrote the first chapter, which wasn’t very definitive, but mostly said much the same thing it sounds like the show said: Asperger’s is underdiagnosed in girls and women, and we need to know more about why. The following chapters all offer advice from women who either have Asperger’s, are mothers or sisters of people with Asperger’s, or are practitioners who have worked closely with girls and women on the spectrum. They’re very interesting, and sometimes also very funny. There’s a chapter-by-chapter description on the Autism Society of NC bookstore website, (which I know, because I wrote it.)
It’s here, if this comment box will let me make links.
It’s a topic I hope we start hearing more about. I find it kind of strange that it gets so overlooked, when the overwhelming majority, at least until recently, of first-hand accounts by people living on the spectrum are by female authors (Temple Grandin, Liane Holliday Willey, Dawn Prince-Hughes, Donna Williams, Gunilla Gerland…)
Sue Rubin……
it’s always interesting how people who have the strongest opinion on AS never have it themselves. Of course we can be affectionate and loving with people we trust and care for. We’re not bloody robots!
As a girl DXd in my 30s I have had a lifetime of dealing with ignorant people who would rather believe that I am neurotic or lazy, than struggling with sensory and sociological issues caused by a biological quirk of fate.
It’s acceptable for boys to act out but not girls so we end up holding all the anxiety in, when really all we need is a safe place to stim.
Instead it comes out in other ways, anorexia and depression or self harm and at worst suicide as we tend to turn our pain quietly inwards. Believe me I have been there. Any girls or parents out there who want to chat about girls with aspergers, drop me an email.
There’s also a book coming out soon from an aspie girl friend of mine called MsBehaviour in New Zealand who blogs here: msbehaviour.blogspot.com
Yes,there definitely such a thing as perseverating over social constructs…also of perseverating over attachment. If you’ve ever read the Little Prince…well, if a person carries the “It’s the time you wasted on your rose that makes it unique in all the world” thing to an extreme, that’s perseveration! This is an interesting topic. I’m a female, and I’ve long suspected my own obsessions and self-stims (some of which are the ‘boy’ kind) were far more characteristic of autism than they were of OCD — but I didn’t think there was a label for me because… well, yes indeed-y, there were some social quirks, but they didn’t present the common portrait of Aspergers.
My daughter is 8 and just went back to the developmental specialist here and we were told the same thing as last time. He can not tell us that she is not Autistic but she does not clearly fit the diagnosis so she is not autistic enough to be diagnosed. His big point with us was that since it is a behavior based diagnosis and the diagnosis is based on boys it is difficult to diagnosis girls that are high functioning since boys and girls behave differently. He wished there was more research on girls who seem to show autistic tendencies since he feels there are just as many girls they are just miss diagnosed with depression or OCD.
thanks, julie—-is there any other professional that you might take your daughter too?
I keep hearing two extremes, that girls with ASDs are either “on the high-functioning end” (not the best way to put it, perhaps), or “severe.”
We live in western NY near rochester NY and there are not a lot of options at the hospitals here. I imagine if out family wanted to eat the cost we could look in a another area but since she is one of three children I do not see that happening in the near future. I have been fortunate that our schools have always provided a great level of service so we do not feel a need to have her formally diagnosed at this time. It ha been very frustrating to know that so little is done in regards to girls specifically. I have also heard the same about girls I think what I am learning is that may not be a true representation of girls on the spectrum but just of the one’s that get diagnosed. I wish more would be done for the girls I have a feeling that there are many out there that are falling through the cracks. That makes me very sad.
i have a 7 year old daughter that i know is autistic. she has every sign. she is seeing therepists and has seen diff doctors since the age of 3. she dont like clothing touching her skin, she struggles to fit in with other children, she used to keep washing her hands, obsesed with routine and would get very anxiouse and upset if things was different. she will take everything so litterely, to a point where at xmas a child said my daughter was ugly and fat. she now trys to make herself sick and hides in the toilet at lunch at school so not to been seen eatting. she pulled so much hair out down her parting she went bald at the front and was hidding the hair behind her bed or stuff it somewhere where she thought no one would find it. she has outbursts at home but appears at school extremely quiet and shy. i feel she is trapped in a little world i dont understand. i feel i,m being fobbed off by therepist who just cant see my daughters problems as she can behave differently to different situations. at 3 she was lineing toys up, hated her room being moved around or change. there are so many things i could go on forever. is there help out there for girls as she is falling through the cracks and nobody is helping me as a mother. i feel like i,m failing my little girl
@michelle,
there help out there. do any of the doctors and therapists you’ve taken your daughter too have specific experience diagnosing autism? perhaps you’ve done this—-have you taken the DSM criteria into them and pointed out not only how she fits it, but how her struggles are related to it?
@julie,
if I may ask—does your daughter have a formal diagnosis of an autism spectrum disorder? what things stood out? what was especially helpful in seeking and getting a diagnosis and services? I have realized that more than a few friends from my past have been women on the autism spectrum and many have had significant struggles—no problem is too “mild.” I think.
lily was seen by a health visitor that thought something was wrong, and suggested she be checked for autism. we then went to a childrens hospital for all behaviours where we was pushed from pillar to post. they wasn,t a 100% sure as lily did not have every sympton as seen more in boys. i noticed a change in lily at 2 years but thought at first its just her own little personality, but all my family members would say have you got her checked over as she has peculiar behaviour patterns. from the hospital we was sent to a childs mental health centre where she see,s somebody who does play therepy with her, but i have no idea what they do as i am not allowed in the sessions. this center called the school where she has special classes once a week to deal with her social skills. they have only told me they think she is on the autistic spectrum. i have been asking for years for a sraight yes or no but just keep getting told they are not sure as its so hard to detect in girls. they now want me to attend attatchment classes but i feel i,m going all over the place, and as her therepist feels she is not sure once again, we are being passed on to another person. i was given forms to fill in but not sure if it was dsm criteria form. i have had to educate myself on autism as i have had no help from anyone to explain things propely to me. every story or video i see is on girls with autism is like looking at a mirrored versian of my daughter. i,m not a proffesional in this subject and parents like myself depend on the specialist to help and advice us. i dont want my daughter to go through life struggling just because they are not sure. one doctor turned round to me and said “well do you want us to label her, surely its better that we dont. this made me feel awful i felt like a liar and walked out of there feeling i dont know where or what to do. why is it so difficult to diagnose girls. my relationship now with my daughter is strained as i dont know if she is just different and does the things for attention, or if its purely that she doesn,t understand of which i belive she doesn,t. till you live with lily and spend every day life with her no one see,s what she really like. my friends will say whats wrong with her, why does she do the things she does? children call her weird and dont want to play with her because she will take over the play role in a teacher way. she cry,s and says mummy i dont know why i do these things, i cant help it. i an seeing someone next week about an attatchment disorder, but i feel this is not what is wrong with lily. this morning we was late for school as lily was screaming about putting her tights on. she was ripping them and rolling all over the floor hysterically because they was touching her skin. her label was touching her so i cut them all off. when she gets in this state her eyes are huge, she feels like she cant breath where she gets so worked up. it can take over an hour just to get her underwear on some days. is there therepist out there that just deal with girls? thankyou so much for your advice as i dont have anyone who can help us, and i,m so glad for the help. michelle
Your story sounds a lot like ours. We were actually told it was because girls present differently that she may never get an official diagnosis. We are considering having her retested at a different hospital in a couple of years since our insurance sees no need at this time to pay for more testing. I wish you the best of luck and would love to speak to you if you ant to contact me jmayerni@rochester.rr.com
@michelle, thank you for writing more about lily—-I’m trying to find out what I can about therapists for autistic girls specifically. I did find some information on the web; please disregard it if you have already seen these sites.
This is a New York Times article, What Autistic Girls Are Made Of
http://www.nytimes.com/2007/08/05/magazine/05autism-t.html?_r=2&oref=slogin&oref=slogin
ABC News also had this report—-
http://abcnews.go.com/Nightline/story?id=4177353&page=1
And The Guardian, on It’s not just boys who are autistic
Some therapists and centers are mentioned in the articles. Hope this is helpful—-
Michelle,
It sounds as though you’re in Britain? I’m just familiar enough with that health system to know how unfamiliar with it I am. But I want to reinforce that if your friends have had these questions about your daughter all along, and it’s fairly common to take an hour to get her underwear on, there’s definitely *something* going on that’s not just “she’s a rotten brat.”
Have you only been taking her to mental-health types? Would an evaluation by a developmental pediatrician or pediatric neurologist be possible?
And in the short-term, does Lily have to wear tights? Could she wear leggings or pants instead? Have you tried different types of underwear?
Some days the internet makes me feel more powerless.
hi caryn thanks for your letter. yes i,m from england. i,m seeing someone today at 1.30pm our time about this attatchment disorder thing, which i know is not right for us, but i,m willing to give it a go for my daughter. but i will be taking a copy of this site of which i have photo copied concerning all these parents and people around the worlds input and back up on how these girls are not getting help. yes lily wore trousers today and today she was ok. it just took time in trying to get her attetion to put the clothes on, as her mind will wander off. lily has started a new school and i,m hopeing that the school will pick up some signs, as lily is out of her commfort zone with the change at the moment. it,s a much smaller school which i have had to fight to get her in, which i thought she might benefit from. we had tears last night with lily saying she just cant understand how numbers work and all the other kids know it. she finds things hard to grasp and if she cant get it perfect lily becomes very anxiouse. i,m so grateful to everyone on here as i,ve been banging my head against close doors, with thinking i,m the only one going through this. if this attatchment therepy is not for me then i have been told i get to go back to the play therepist. i did contact lily,s play therepist yesterday and was told she has got a little girl that has been there 5 months longer than lily and they have just finally diagnosed her with autusm, and did explain they dont want to label a child unless they are 100% and with girls it,s so hard, if they label her wrong then this stays with lily for the rest of her life. this is the first time i,ve put my foot down and become more assertive. but after reading everyones concerns on this subject, i feel i need to. so thats why i,m so thankful for all your help as it,s made me feel i,m not alone out there and given me the confidence to speak up.
Your sons monologue in waking life was absolutely amazing, and inspiring! I just wanted to thank him and let you know how much I connected with his words.
Thanks,
Mitch