Comments on: Is Autism Underdiagnosed in Girls and Women?

By: Mitch

Mitch — Fri, 18 Sep 2009 16:39:52 +0000

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

By: michelle

michelle — Wed, 17 Sep 2008 10:09:27 +0000

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.

By: Caryn

Caryn — Wed, 17 Sep 2008 07:17:45 +0000

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.

By: Help Needed; and, Is Autism Different in Girls?

Help Needed; and, Is Autism Different in Girls? — Wed, 17 Sep 2008 00:41:35 +0000

[...] 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 [...]

By: Kristina Chew, PhD

Kristina Chew, PhD — Wed, 17 Sep 2008 00:32:26 +0000

@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—-

By: julie

julie — Tue, 16 Sep 2008 12:55:25 +0000

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

By: michelle

michelle — Tue, 16 Sep 2008 08:55:40 +0000

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

By: Kristina Chew, PhD

Kristina Chew, PhD — Tue, 16 Sep 2008 05:10:17 +0000

@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.

By: michelle

michelle — Mon, 15 Sep 2008 22:38:40 +0000

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

By: julie

julie — Fri, 08 Aug 2008 17:30:08 +0000

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.