• Welcome to Autism Forums, a friendly forum to discuss Aspergers Syndrome, Autism, High Functioning Autism and related conditions.

    Your voice is missing! You will need to register to get access to the following site features:
    • Reply to discussions and create your own threads.
    • Our modern chat room. No add-ons or extensions required, just login and start chatting!
    • Private Member only forums for more serious discussions that you may wish to not have guests or search engines access to.
    • Your very own blog. Write about anything you like on your own individual blog.

    We hope to see you as a part of our community soon! Please also check us out @ https://www.twitter.com/aspiescentral

Help Needed - High Functioning Autism in Girls Parents View

Christina Hyatt said:
Hi

My friend was diagnosed with Aspergers at age 30 and as an NT I wondered how this had been missed?! Her brother has AS which was diagnosed at five and he received help throughout his school years and into adulthood. On the other hand, my friend received no help and I think this has contributed in large part to the mental health problems she has experienced for the whole of her adult life. The unfairness of this situation really strikes me and it angers me that my friend did not receive the help she has needed.

Because of the above, I have a strong personal interest in ASD and Aspergers in females, I'm a Masters level student and for my dissertation I would love to speak to parents of girls who have been diagnosed with high functioning ASD. I'm particularly interested in looking at the way ASD looks in girls compared to boys.

I'd really like to try and accurately represent the experiences, thoughts and feelings of parents of girls with ASD - would anyone be willing to speak to me?

Chrissy
Click to expand...

This tortured me as well. I was dex Autism NOS and PDD. Went back this year for services because I could not get a breast lump looked into because of sensoryissues. The psych pretty much laughed in my face. And said because I greeted them, he knew I did nothave it.

So not only was I denied services. In a 23 minute interview, ignoring all my sensory issues, neuro issues, social issues, head banging, etc. .......because I did not hand flap and loooked him in the eye, he reduced all my struggles and my own life affirmation that was autistic and vulenrable and gentle and not hurting anyone to telling me I had aperainltiy disorder and go get DBT.

I am stillin a breakdown over it, cannot get hepl, afraid of Drs now, cannot look into breast lump, melting down every other day, feeling like I am a piece of sh** and sucidal.

Thanks, Mr Big Autism Dr who is getting grants form pharm co's to try to kill off autism in the womb. You are doing a good job of killing us off now, too. Where is HELL when you need it?
 
I'm so sorry to hear of your experience, it genuinely saddens me to hear of such ignorance and poor treatment, it's awful the Dr wouldn't take you seriously and can totally understand your feeling about Drs! In my experience, not all Drs are the same and I hope you can find the courage to face your fears and go and see someone again.

This persons ignorance shouldn't stop you from accessing medical help, though I can see why you have been put off. I went to see my Dr recently and she was really rude and dismissive and I walked out, sat in my car and cried. So whilst I can't say I completely understand, I know what it's like not be listened to and to have your thoughts invalidated - it's horrible!!

I just hope in the future medical professionals, psychologists etc start to understand autism is different for girls and women. It strikes me as a historical lack or information, or misinformation, which has led us to a point where it is seen as being primarily a male issue. Also there seems to be a bias toward to male core set of characteristics and people just don't take women seriously! I'm sorry you have been on the receiving end of that :(
 
Christina - I'm NT, and for years I have been voluntarily tutoring young adult autistics who hope to obtain their GEDs. I also have a HFA sister-in-law who was diagnosed over 30 years ago while she was in her 20s and her LFA young adult son (my nephew) who was diagnosed at age 2. I know numerous parents of autistics and probably could hook you up with some of them if I had a way to privately communicate with you. Some of the parents are autistic; others are not. I will spread word around the college where I teach that you are interested in researching aspects of female autism and direct the parents to this thread on this website in case they want to get involved. Good luck, God bless, and thank you for delving deeper into female autism issues.
 
Christina Hyatt said:
Hi

My friend was diagnosed with Aspergers at age 30 and as an NT I wondered how this had been missed?! Her brother has AS which was diagnosed at five and he received help throughout his school years and into adulthood. On the other hand, my friend received no help and I think this has contributed in large part to the mental health problems she has experienced for the whole of her adult life. The unfairness of this situation really strikes me and it angers me that my friend did not receive the help she has needed.

Because of the above, I have a strong personal interest in ASD and Aspergers in females, I'm a Masters level student and for my dissertation I would love to speak to parents of girls who have been diagnosed with high functioning ASD. I'm particularly interested in looking at the way ASD looks in girls compared to boys.

I'd really like to try and accurately represent the experiences, thoughts and feelings of parents of girls with ASD - would anyone be willing to speak to me?

Chrissy
Click to expand...
I have been reading that Aspergers can manifest very differently in females than in males. I only related slightly to characteristics of males on the spectrum, but when I read about females, it was like they were describing me, my life! Even now, as an adult, I think it is easy to not be diagnosed as a female, they just don't know how to look for it, and women can be very good at masking - people only see the mask, and don't see the cost at which it comes. I am happy to see someone interested in furthering research in this area!

I can't help you with NT parent's opinions though....my mother passed away, before I realized I likely have Aspergers. I wish she could have known - she may have not believed. But if she did, I think it would have explained so much that she had to struggle with because I myself was struggling. My father is likely on the spectrum, too, but is blind to the fact that anything is wrong and won't seek help. His opinion of me is that I have a terrible character, and that is the cause of all of my problems. Actually, that's what my mother thought also, but I like to think maybe she would have had a less harsh opinion had she known.
 
I've read exactly the same things, there is some research around this, but there isn't enough at the moment to say there is a specific way Aspergers manifests in females. Which is a shame, unless this happens, diagnostic criteria won't change and women will continue to be missed or misdiagnosed.

It sounds like your parents had/have their own struggles and perhaps couldn't see past those. Though I could be wrong there! I realise my opinions and understanding on things on here are skewed by being an NT!

From chatting to people I've reconsidered the direction of the research, I'd love to look at a multi perspective. So females with Aspergers HFA, parents and people who work in a professional context. The more views which agree with each other, the more validity this offers to research. Hope that makes sense. If you would like to help and contribute, that would be amazing. However, I have seen some friction on here between NT and Aspie, which I can understand - I'll probably annoy and upset people on here accidentally, but I'm sure most people on here have experienced doing that. I don't want to perpetuate that cycle, so apologies if that happens. I'm not sure how people feel about talking to an NT. I'm not here to villify or misrepresent anyone, I'm lookimg to do exactly the opposite! But that's a leap of faith some may not want to take.

Thanks for sharing your experience :)
 
Last edited:
I'm a self-diagnosed female Aspie, having figured it out after having a daughter diagnosed with Autism. I am now 51 and my daughter is 9.

A very good source of information about the History of Autism diagnosis is Neurotribes by Steve Silberman (https://smile.amazon.com/NeuroTribes-Legacy-Autism-Future-Neurodiversity-ebook/dp/B00L9AY254). Apparently the history of Autism diagnosis is based on male subjects, and some recent research seems to point to Autism being more prevalent than previously thought in females.

My perspective/belief is that it's been there all along, and women are just not as well observed in medicine or mental health historically. In fact, I personally think that Autism (which is not really that well defined, being mostly a list of observations of boys that have been taken to researchers because they are not fitting typical stereotypes) is probably equally represented among male and female, with different behavioral and emotional traits due to both genetics and stereotypes of NTs.

So what we have now is a whole lot of undiagnosed females, and we are figuring out solutions and coping mechanisms on our own as it will probably take years for the research community to gather enough data to be of real use to us.

There are SO many theories on what Autism actually is, physiologically, emotionally, etc, but I think the main takeaway is that it's just normal human diversity that NTs (whatever that means) have a hard time understanding.
 
Emerging research suggests the ratio is closer to 2:1, though that may change as time goes on. There is some neuroscience research which suggests there are genetic factors which protect females from autism, so I'm not sure if the ratio will be closer to 1:1, I guess thats's something time will reveal.

I agree with you about autism representing part of human diversity, I can't speak for all NT's, in the same way someone with Aspergers can't speak for all people with Aspergers, but I think that is really obvious. However, I don't think looking at it through this lens is particularly helpful in terms of understanding how autism/Aspergers affects individuals, how diagnostic tools can be improved, nor does it contribute towards educating people - NT and Aspie alike! But those are just my views, so entirely subjective! :)

You're right it probably will take years for the research community to catch up, currently the consensus is there are no core sex differences in HFA/Aspergers in males and females. However, there a there are gender differences (cultural as opposed to biological) which impact on how HFA/Aspergers manifests in females. Hopefully, more research will better define those differences and this will then lead to changes where females are 'seen' and receive help, rather than just adopting maladaptive coping strategies. Like you say, this is a lengthly process and even then, it is subject to change and refinement, as any quest for knowledge is! :)
 
Christina Hyatt said:
Hi

My friend was diagnosed with Aspergers at age 30 and as an NT I wondered how this had been missed?! Her brother has AS which was diagnosed at five and he received help throughout his school years and into adulthood. On the other hand, my friend received no help and I think this has contributed in large part to the mental health problems she has experienced for the whole of her adult life. The unfairness of this situation really strikes me and it angers me that my friend did not receive the help she has needed.

Because of the above, I have a strong personal interest in ASD and Aspergers in females, I'm a Masters level student and for my dissertation I would love to speak to parents of girls who have been diagnosed with high functioning ASD. I'm particularly interested in looking at the way ASD looks in girls compared to boys.

I'd really like to try and accurately represent the experiences, thoughts and feelings of parents of girls with ASD - would anyone be willing to speak to me?

Chrissy
Click to expand...
I’m a parent of an Aspie daughter. She inspired me to get my doctorate so I could do research and increase public and professional awareness about the needs of females on the spectrum. To date I’ve published a few articles, presented at conferences, trained counselors and college personnel, and recoded a podcast on the topic. The diagnostic criteria for aspergers and autism were based on the male presentation. In fact all Aspergers early cases were boys. Many women struggle with trying to convince doctors and therapists that the are on the spectrum. Often they are misdiagnosed with ADHD (my daughter’s experience), eating disorders, or other conditions. Some professionals are starting to recognize that autism looks different in females, but it’s slow progress.
 
One annoying thing I do get is "You don't look autistic." Right. Because you don't know much about autism, maybe?
 
You must log in or register to reply here.

New Threads

Top Bottom