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Help Needed - High Functioning Autism in Girls Parents View

C

Christina Hyatt

Active Member
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
 
I hope someone here will be able to give helpful feedback.

As far as I am aware, HFA which is what I have is close to Asperger's on the spectrum and as such, a diagnosis in girls is one in four so 25%.

I do have a friend, Zoe, who has Aspergers and is 21.

But through my groups the statistic seems to be consistent as most of the Aspies are male.
 
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.
Click to expand...

Sorry, I'm not a parent. Though I feel compelled to share a bit here. That you'll likely be shocked at how many of us have lived out nearly our entire lives without ever being diagnosed. Even though in some cases like myself, I was examined by psychiatrists at various times of my life. I have issues, and my own personal demons as such. But I'm also high-functioning to a degree where society is likely to only tell me to "pull myself up by my bootstraps". For those of us in such a precarious place, our only real resource is ourselves.

Since you're already here, I'd suggest you focus on searching (within our site) two critical aspects of your query:

1) How varied persons' experiences are concerning formal diagnostics by medical professionals.

2) The Aspie Female. And how difficult they might be to spot compared to their male counterpart.

When I look back in hindsight I can easily identify my fellow male counterparts who at some time were within my social orbit. But Aspie females? That makes my head spin trying to think if I ever actually came into contact with them.
 
I was also diagnosed last year at 30. My best friend was diagnosed HFA at 29. As @Judge said, female aspies are more difficult to spot. In terms of my friend, she has other conditions that overlap with autism and for me, I was thought of as weird and the like, but academically I was above average, so people believed there couldn't possibly be anything amiss.
 
xudo said:
In terms of my friend, she has other conditions that overlap with autism and for me, I was thought of as weird and the like, but academically I was above average, so people believed there couldn't possibly be anything amiss.
Click to expand...

Yep. I went through my whole life just surmising that I was an introvert. Never gave a thought to autism. Not to mention that many of my traits and behaviors were at low amplitudes. Making other things like my OCD and clinical depression often transparent to others.

So under the circumstances, if I couldn't recognize them so easily, why should anyone else?
 
Um, I'm 13 and aspie? You might also want to PM @bean who's 17 and aspie? There are a few aspergirls on here.
 
I wasn't diagnosed with Aspergers until I was 27. It's not uncommon at the very high-functioning level to be diagnosed later in life. With other forms of autism, there is delayed language development, and if the child is not speaking until age four or whatever, or if he just lives in his own little world and shows no interest in the outside world, then parents stand up and take notice. With things like aspergers, the child can seem to be perfectly "Normal" until later in life. They may just seem like a weird college professor type of person, and the parent doesn't seek help. Before aspergers was a diagnosed thing, aspies lived their entire lives without a diagnosis and did just fine.
Welcome, by the way.
 
Welcome. Perhaps you might consider asking Autistics ourselves about our own lived autistic exoerience... rather than our NT parents. We usually do have insight into our condition. Many of us were raised undiagnosed, without appropriate supports in place.

Dr. Tony Atwood also did a nice YouTube piece on females on the spectrum, "chameleons," flying under the radar, and what happens when the mask falls off.
 
Nemo said:
Um, I'm 13 and aspie? You might also want to PM @bean who's 17 and aspie? There are a few aspergirls on here.
Click to expand...
Also @Reedstorm17 who's 16 according to her bio? Idk just suggestions if you're looking to chat to girls with ASD - because I know that my parents don't know half as much as they think they do about me.
 
Thank you for all the replies, I am also interested in the lived experiences of adult females with HFA and Aspergers. I've read around this area extensively and I have some understanding of the difficulties experienced - though obviously only from an NT and academic perspective!

Would any of you be willing to talk about your experiences of being autistic and getting a diagnosis? I know it's really common for girls to be missed and/or misdiagnosed. This happened to my friend and I've seen firsthand how this has affected her.

Chrissy
 
Warmheart said:
Welcome. Perhaps you might consider asking Autistics ourselves about our own lived autistic exoerience... rather than our NT parents. We usually do have insight into our condition. Many of us were raised undiagnosed, without appropriate supports in place.

Dr. Tony Atwood also did a nice YouTube piece on females on the spectrum, "chameleons," flying under the radar, and what happens when the mask falls off.
Click to expand...

Help us but at the same time render us voiceless...
 
Fridgemagnetman said:
Help us but at the same time render us voiceless...
Click to expand...
The whole point of qualitative research is to work with people to offer them a voice. I'm sorry of that wasn't made clear, or if at some stage in your life you feel your voice hasn't been representated or misrepresented. I'm not a psychologist or education professional, I'm a student, who has an Aspie friend, my interest is personal and so are my motivation.
 
When In Rome said:
I hope someone here will be able to give helpful feedback.

As far as I am aware, HFA which is what I have is close to Asperger's on the spectrum and as such, a diagnosis in girls is one in four so 25%.

I do have a friend, Zoe, who has Aspergers and is 21.

But through my groups the statistic seems to be consistent as most of the Aspies are male.
Click to expand...

I think there are lots of reasons for this, women are not represented at the high functioning end, I think this is due to a gender bias. So I think this is something which needs to be addressed.
 
Judge said:
Sorry, I'm not a parent. Though I feel compelled to share a bit here. That you'll likely be shocked at how many of us have lived out nearly our entire lives without ever being diagnosed. Even though in some cases like myself, I was examined by psychiatrists at various times of my life. I have issues, and my own personal demons as such. But I'm also high-functioning to a degree where society is likely to only tell me to "pull myself up by my bootstraps". For those of us in such a precarious place, our only real resource is ourselves.

Since you're already here, I'd suggest you focus on searching (within our site) two critical aspects of your query:

1) How varied persons' experiences are concerning formal diagnostics by medical professionals.

2) The Aspie Female. And how difficult they might be to spot compared to their male counterpart.

When I look back in hindsight I can easily identify my fellow male counterparts who at some time were within my social orbit. But Aspie females? That makes my head spin trying to think if I ever actually came into contact with them.
Click to expand...

My friend had a similar experience, from what I understand Autism manifests and presents differently in females. Currently,it's an under researched area, which unless it is researched, things won't change.

I'm sorry you've had such a terrible experience with diagnosis, but I think from speaking to people and my reading, it's really common.
 
Mia said:
You might want to take a look at some of the resources for females on the spectrum:

Aspergirls: Empowering Females With Asperger Syndrome
Nerdy, Shy, and Socially Inappropriate: A User Guide to an Asperger Life
Musings of an Aspie
An Anthropologist on Mars
Safety Skills for Asperger Women: How to Save a Perfectly Good Female Life
Temple Grandin: How the Girl Who Loved Cows Embraced Autism and Changed the World
Parenting Girls on the Autism Spectrum
Click to expand...
NeoPhile said:
I wasn't diagnosed with Aspergers until I was 27. It's not uncommon at the very high-functioning level to be diagnosed later in life. With other forms of autism, there is delayed language development, and if the child is not speaking until age four or whatever, or if he just lives in his own little world and shows no interest in the outside world, then parents stand up and take notice. With things like aspergers, the child can seem to be perfectly "Normal" until later in life. They may just seem like a weird college professor type of person, and the parent doesn't seek help. Before aspergers was a diagnosed thing, aspies lived their entire lives without a diagnosis and did just fine.
Welcome, by the way.
Click to expand...

I know, there is a real difference between what is called 'classic' autism and HFA and Aspergers. I don't think anyone should be defined by their diagnosis, it really only seems to be an issue if you don't have strategies to cope - though that is an outsiders perspective, so I may be wrong!
 
Warmheart said:
Welcome. Perhaps you might consider asking Autistics ourselves about our own lived autistic exoerience... rather than our NT parents. We usually do have insight into our condition. Many of us were raised undiagnosed, without appropriate supports in place.

Dr. Tony Atwood also did a nice YouTube piece on females on the spectrum, "chameleons," flying under the radar, and what happens when the mask falls off.
Click to expand...

Thanks, I've seen this, really interesting like you said. He's also written a couple of books about the subject too, there are also some good pieces of emerging research about 'camouflaging'. Dr Lorna Wing has written quite a bit about this too :)
 
Christina Hyatt said:
The whole point of qualitative research is to work with people to offer them a voice. I'm sorry of that wasn't made clear, or if at some stage in your life you feel your voice hasn't been representated or misrepresented. I'm not a psychologist or education professional, I'm a student, who has an Aspie friend, my interest is personal and so are my motivation.
Click to expand...

So that's me told then. Thank you for correcting me! (Sarcasm) and your not needed apology.

The whole point of my post was :
1. Your original post asked for the views of 'parents'
2. I was responding to a post, which was quoted. My post should be read in that context.

The 'voiceless' comment is more aligned to you posting on an aspie forum asking for views of non aspies.......
What good are we then? Hence the voiceless comment.

I notice after reading several posts you revised and the asked for views of aspies..

A viewpoint the for your consideration only
 
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