Help Needed; and, Is Autism Different in Girls?
September 16, 2008 by Kristina Chew, PhD
Filed under Health
Help needed for autistic children in Puerto Rico: Please contact Maria.
And a mother recently wrote about her 7-year-old daughter in a post on autism being underdiagnosed in girls and women:
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. ……………….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
Suggestions and support—more than appreciated.
Addendum, 20.15 EST: The BBC News just reported on a yet to be published study that has shown that girls with “mild autism” are less likely to be identified and diagnosed than boys, due to the girls showing different symptoms and “fewer signs of symptoms traditionally associated with autism, such as repetitive behaviour.” And:
The researchers, who have yet to publish their research, found that the girls were more likely to have obsessional interests centred around people and relationships.
However, these interests were more likely to be acceptable to their parents, and therefore tended not to be reported to doctors.
In addition, these types of obsessions were less likely to be discovered using standard diagnostic questionnaires.
The investigators said more research was needed to analyse how autism spectrum conditions manifest differently in the sexes.
…………….
Judith Gould, of the National Autistic Society, said: “We hear from many women who have been diagnosed later in life.
“The way autism is presented in women can be very complex and so can be missed.“It might be that due to misconceptions and stereotypes, many girls and women with autism are never referred for diagnosis, and so are missing from statistics [my emphasis].
“This may mean that many women who are undiagnosed are not receiving support, which can have a profound effect on them and their families.”
When I was looking for a diagnosis, I once got turned away in the middle of my first meeting with one doctor. The reasons he specified?
“You can talk, you’re not sitting in a corner spinning a string, and you’re female.”
Ummmmm, yeah. And people wonder why I hate seeing new doctors.
If you’re having trouble getting diagnosed through the front door, try a back door. Take to the OT and get her diagnosed first with sensory integration dysfunction or sensory processing disorder. If she seems to have OCD, get that diagnosis from her psychologist. Document problems with social interactions and cues. If she is having communication problems, get the SLP to diagnose a communication or speech disorder. Try to get services for each of these different problems separately, so that at least she will be getting the support she needs until you can track down a doctor who knows more about autism and diagnosing it.
The first doctor I went to about my ASD daughter told me she’s ‘just quirky.’ I then found a person who specializes in ASD and of course, she was diagnosed. I think it was worth every penny, in terms of schooling.
Oh, I have a diagnosis. (PDD-NOS, for what it’s worth.) And the way I got it isn’t all that different from what you suggest, Joeymom. It’s just the “facts” that people on the spectrum evidently stop being autistic once we hit puberty, or that women can’t be autistic, et cetera, that make me go a little crazy.
I am in the same boat. I took my daughter to get a diagnosis and the Dr. was “happy to report” she wasn’t autistic. And yet, she’s now getting services through school for autism because she qualified through their eval.. go figure.
Again, the perils of diagnosing a “disorder” based on a collection of observed behaviors–in this case, it virtually eliminates the possibility of a female or an adult (or even an older child) ever getting a diagnosis.
I would suggest that for all the studies and books, we are little removed from the dark ages in our understanding of what autism is.
I should also add that current diagnostic criteria also allow for the phenomenon of “recovery” as children grow older.
The IACC strategic plan specifically mentions the following as a “research opportunity”
“Research on females with ASD to better characterize clinical, biological and protective features.”
People should look over the Strategic Plan and comment.
The Plan is here:
http://www.nimh.nih.gov/research-funding/scientific-meetings/recurring-meetings/iacc/strategic-plan/2008/iacc-strategic-plan-august-2008.pdf
comments can be made by emailing iacc@mail.nih.gov. Put NOT-MH-08-021 in the subject line.
http://grants.nih.gov/grants/guide/notice-files/NOT-MH-08-021.html
I know you (Kristina) have mentioned this already, but I hope you don’t mind me pushing the idea some more.
Sullivan,
Thanks for highlighting that.
This is exactly what we are going through. The developmental psychologist at our developmental center I think spends all day everyday diagnosing these disabilities and is very by the book. I did tell him that my daughter has been and at times still is obsessive about talking about death and dying. That it is strange and not natural conversation at normal times. He said to me that it is not stereotypical obsessive behavior and without that component he can not diagnose her. He said to me I can not tell you she does not have it what I can say is that with the criteria I have today which is primarily based on diagnosing a boy of a certain age she does not fulfill the necessary criteria to diagnose her. Right now the schools have been great and she is receiving everything she needs during the school day. The problem I see is that down the road she may not have access to the services that she needs after school. I would love to have my daughter included in a study but without the label we can not even though we were told she looks autistic in most ways and would benefit from programs for autistic children. It has been very frustrating to feel like we are banging our heads against a brick wall just to be told she has what we already know she has.
No one has ever had any hesitation of diagnosing my daughter as having autism. In low-functioning autism the ratio of boys to girls still favors boys, but becomes closer to 1:1. High functioning autism and Aspergers much rarer in females than males. This is undoubtedly more due to genetics than prejudice, though the latter cannot be ruled out as a contributing cause.
@mayfly, do you have a citation about the ratio of boys to girls that you refer to?
Charlie has had only boys in his classroom for years.
@julie,
talk about frustrating…..on what basis has the school given her some services (speech, sensory issues?)?
The schools had her evaluated before she started kindergarten and she showed serious delay in sensory and speech so they provided those services as well as emotional issues so she also is in a special ed class and receives psych services as well