Help Needed - High Functioning Autism in Girls Parents View

[Fridgemagnetman]

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!

Copied comment which should be worthy of further notice :
it really only seems to be an issue if you don't have strategies to cope

 

[Christina Hyatt]

My post wasn't sarcastic, I'm sorry if it's been taken that way, I genuinely meant no offense. I was just explaining the purpose of qualitative research.

There have been some good points raised on here, things which as an NT I didn't think of. In light of which, I can change the direction of the research. It's a reflexive process and I'm here to learn.

In research the lived experience of everyone is valid, including parents, also from an ethic point you can't necessarily seek the views of children, as you might cause them harm.

I'm not here looking for a fight, I'm looking to listen and learn. Again, I'm sorry if that hasn't been made clear.

 

[Christina Hyatt]

Copied comment which should be worthy of further notice :
it really only seems to be an issue if you don't have strategies to cope

I'm not sure what the purpose of this is. I haven't said I understand what it's like to be autistic - I doubt anyone who isn't will ever fully understand. But I don't see how wanting to understand and learning through that process is a bad thing.

I feel like you're attacking me, but I'm not sure I deserve it and I don't understand why/

 

[Blast off]

I am the parent of a son, and the only input I can give upon this subject is the ratio of girls in my sons school, to boys, is about 4 boys to every 1 girl. This either indicates that girls do in fact skate under the radar, or for some reason they are less commonly effected with ASD. This coming from my small bubble in the world..

 

[Christina Hyatt]

I'm not sure what the purpose of this is. I haven't said I understand what it's like to be autistic - I doubt anyone who isn't will ever fully understand. But I don't see how wanting to understand and learning through that process is a bad thing.

I feel like you're attacking me, but I'm not sure I deserve it and I don't understand why/

I also note you didn't copy the part of my sentence where I qualify that statement.

I am the parent of a son, and the only input I can give upon this subject is the ratio of girls in my sons school, to boys, is about 4 boys to every 1 girl. This either indicates that girls do in fact skate under the radar, or for some reason they are less commonly effected with ASD. This coming from my small bubble in the world..

From current research I think it's a combination of both of those things, girls do go under the radar, but there are genetic factors which may protect females from autism. I appreciate your reply and point of view, I don't think it matters if it's from your bubble, everyone has something to add from their experience and everyone's views are valid. Even the ones we may not agree with!

 

[WereBear]

I was self-diagnosed, then officially diagnosed, last year at the age of 56. Of course, no one would have caught on when I was a child.

I agree that even now, girls are not recognized if they are high functioning. Elsewhere on the site I referenced a paper about Rose Williams, Tennessee William's sister, who showed many signs of Asperger's that was mistaken, and I'm sure later became, mental illness.

It is my own feeling that a lot of the mental distress syndromes those with HFA suffer are created by societal pressures which do not acknowledge the special needs of Aspies; or, for that matter, the needs of NTs!

I was shy and bookish and good in school and uninterested in sports and this shades more "normal" for a girl than a boy. I also think girls have more genetic advantage with social interaction; there's a genetic syndrome where people are severely challenged in life functions but are so socially adept it can be hard to tell on first meeting. That tells me a lot of this adeptness is brain structure.

Then again, the pressure on girls to be socially adept is greater than for boys. Especially in certain cultures: being raised as a girl in the Deep South meant I had a teen template I was doomed to be hopeless at fitting into. I was fortunate that the rebellious crowd I fell into was an art scene, where roles were far more fluid and "eccentricity" was respected.

I would be glad to give you more of my perspective, like an email interview or such.

 

[LittleLemon]

My daughter was diagnosed at the age of 6 and I was diagnosed not too long after when I was 31. I flew under the radar though multiple teachers and counselors expressed concerns. Not even a trip to the ER raised red flags. I was just a "depressed teen," but it was way more than that.

I completely missed signs in my daughter though in retrospect, there were signs when she was an infant. She was so much like me that I didn't think anything of it. Her kindergarten teacher was the one who raised concerns and I figuratively had to be hit over the head to finally get what the school was hinting at and got her diagnosed. Her behavior is what differentiated us. When she got overstimulated, she acted out. She rocked, she stimmed, she meowed, she ran into things, people, etc. When I got overstimulated, I withdrew into myself. No one questions why the girl in the corner is so shy, quiet, and didn't have any friends. I was a star student, so teachers liked me, but every single one said I needed to speak up more. I was quirky and dressed funny, but that was just put down as awkwardness. If my daughter's behavior wasn't so problematic at school, I wonder if it would have ever been caught. When I brought individual problems to the pediatrician, my concerns would always be brushed off because a lot of it were things NT children can do. She had major sleep problems, she smeared poop everywhere, she didn't toilet train until 4, she always needed to be squeezed, she overreacted, had severe tantrums, ate the same things everyday, didn't respond to her name, had zero interest in other kids, etc. If I put it all together, maybe the pediatrician would've caught it. Maybe.

Hope this wasn't too hard to follow. I try not to beat myself up too much for not recognizing the signs.

 

[Christina Hyatt]

My daughter was diagnosed at the age of 6 and I was diagnosed not too long after when I was 31. I flew under the radar though multiple teachers and counselors expressed concerns. Not even a trip to the ER raised red flags. I was just a "depressed teen," but it was way more than that.

I completely missed signs in my daughter though in retrospect, there were signs when she was an infant. She was so much like me that I didn't think anything of it. Her kindergarten teacher was the one who raised concerns and I figuratively had to be hit over the head to finally get what the school was hinting at and got her diagnosed. Her behavior is what differentiated us. When she got overstimulated, she acted out. She rocked, she stimmed, she meowed, she ran into things, people, etc. When I got overstimulated, I withdrew into myself. No one questions why the girl in the corner is so shy, quiet, and didn't have any friends. I was a star student, so teachers liked me, but every single one said I needed to speak up more. I was quirky and dressed funny, but that was just put down as awkwardness. If my daughter's behavior wasn't so problematic at school, I wonder if it would have ever been caught. When I brought individual problems to the pediatrician, my concerns would always be brushed off because a lot of it were things NT children can do. She had major sleep problems, she smeared poop everywhere, she didn't toilet train until 4, she always needed to be squeezed, she overreacted, had severe tantrums, ate the same things everyday, didn't respond to her name, had zero interest in other kids, etc. If I put it all together, maybe the pediatrician would've caught it. Maybe.

Hope this wasn't too hard to follow. I try not to beat myself up too much for not recognizing the signs.

I followed it all, it absolutely makes sense. It sounds like you've had a really difficult time and I honestly don't think anyone can blame you for not picking up on the signs. Autism in girls is very under researched, if the 'experts' can't recognise what's going on, I don't like any of us can be expected to. Now you have the knowledge, I'm sure you're doing your best to help her, that's all that matters. Please try not to beat yourself up about it, though that's easier said than done.

 

[LittleLemon]

I followed it all, it absolutely makes sense. It sounds like you've had a really difficult time and I honestly don't think anyone can blame you for not picking up on the signs. Autism in girls is very under researched, if the 'experts' can't recognise what's going on, I don't like any of us can be expected to. Now you have the knowledge, I'm sure you're doing your best to help her, that's all that matters. Please try not to beat yourself up about it, though that's easier said than done.

Thanks. I just repeat to myself that I couldn't possibly have known. I'm just happy she's getting help now, so hopefully she doesn't have to go through the same thing I did. I wish I would have known 20 years ago.

 

[WereBear]

I try not to beat myself up too much for not recognizing the signs.

How could you? You didn't know they were signs!

It's a mostly recognized issue that girls are overlooked, due to the attitude that autism is a male syndrome. And lately, at least in the US medical system, a rare disease might as well not be a disease at all, they pay so little attention to that possibility.

 

[Christina Hyatt]

How could you? You didn't know they were signs!

It's a mostly recognized issue that girls are overlooked, due to the attitude that autism is a male syndrome. And lately, at least in the US medical system, a rare disease might as well not be a disease at all, they pay so little attention to that possibility.

Very true! There is an historical bias towards males in autism research, girls are out there, they've just been completely missed or overlooked. The ones who have been diagnosed generally fit the core, male characteristics of autism.

 

[Mia]

You may want to read up on Simon Baron Cohen's theory, and take a look at this article related to his perceptions, if you are not already familiar with it. The more studies and research on females on the spectrum the better for us.

Autism: What's Sex Got to Do With It?
Are you empathetic or are you a systemizer? That's the fundamental difference between women and men, according to a prickly theory from psychologist Simon Baron-Cohen. To him, autism is a case of the extreme male brain. Autism: What's Sex Got to Do With It?

Personally I find his theory half-accurate to an extent, but few people are one thing (empathetic) or (systemizer's). Happen to be a little bit of both. And many females on the spectrum are. It's expected that we as females will be more social, and can get by as young girls being passive, introverted, quiet. We fall under the radar for various reasons, likely because the early studies of autism involved boys. Apparently you can't be autistic is you have empathy, which I do, although it's more or less related to animals than people. My aspie spouse also has a great deal of evident empathy for animals as well. Cohen missed that entire area of empathy.

 

[Christina Hyatt]

Thanks Mia, I've read some of his papers. His work has come under a lot of criticism in the past, personally I agree with you and I think there may be a bit of something in it, but I don't agree with it all. Baron-Cohen says autism is just an extreme version of male brain, however the studies he used to support his theory haven't been methodologically sound. I know a couple of diagnosed and undiagnosed Aspie females and I don't think they lack empathy at all, so from my personal experience, I disagree with him. I don't think we can slot people into a box like that!

 

[WereBear]

If anything, I have more empathy than average. My NT husband can get a little rattled by how upset I can be over even fictional representations of cruelty. I can't watch Game of Thrones, for instance: too many innocents getting too much misery.

Yet I have not nearly the same problem with The Sopranos; probably because in that show, the main characters chose this lifestyle and are asking for what they get.

 

[Christina Hyatt]

My friend who is Aspie is much the same, she has a real sense of justice and I've seen her cry over a homeless man in the street. She was the only person not to walk past him when he'd passed out in the road, no one else paid attention. She said she couldn't bear to leave him.

 

[Chris Russell]

Simon Baron-Cohen and Tony Attwood need to be read in tandem, I think. One is based in the science, one in the lived reality. They were both PHD students at University College, London. They are both interesting to read, and have valid observations and theories. Women and men can score anywhere on the AQ scale (I score a hefty 47 out of 50 on the Cambridge scale, as I am quite the systemiser.) This doesn't mean I am without empathy. I just need people to be a bit more explicit about how they are feeling, before I pick up on it.

Asperger girls can be chameleons indeed - real masters of disguise... I blagged through my joyless existence for 40 years in complete ignorance of my ASD; and despite my inability to make any friends at school, constant mental distress and an unusually keen interest in animal taxonomy, ancient Greek literature and paleontology from the age of 10, (instead of smurfs and Kajagoogoo) no-one ever approached me about the possibility.

My parents never had a clue, and neither did I. Of course I knew I was different, but I was also extremely capable, and society judges the capable differently. My despair and mental distress at my predicament was more likely to be met with confusion at best and disgust at worst. I had to find out at the age of 44, whilst learning about Autism in an hour long presentation at my school: I heard the presenter talking about the triad of impairments and was floored by the recognition.

The problem may simply be that, when faced with such a negative response from so many for so long, it is simpler for girls to 'act normal' when in social situations - but of course this can come at a terrible cost...

 

[Christina Hyatt]

I think you raise some really valid and interesting points. Especially about the effect hiding ASD has on a persons mental state, I certainly have seen my friend increasing suffer from mental health difficulties. I guess the pressure to conform becomes to much.

It isn't helped by a lack of understanding about how autism in females specifically manifests. So little is really known about it, though that is definitely starting to slowly change.

It's a crazy situation where you've ended up self-diagnosing, to me it's just more evidence to support a potential gender bias in diagnosis. I'm glad you eventually found an answer and I hope it has helped you in some way.

 

[bean]

Hey Christina, I got your PM and right now the site's not letting me send you any messages. Anyway, I'd be happy to answer any questions you might have about my experience as a girl on the spectrum.

I first suspected I was on the spectrum about three years ago and only got diagnosed this year. Life's been tricky trying to seem like an NT to fit in and the like.

 

[Christina Hyatt]

Hey Christina, I got your PM and right now the site's not letting me send you any messages. Anyway, I'd be happy to answer any questions you might have about my experience as a girl on the spectrum.

I first suspected I was on the spectrum about three years ago and only got diagnosed this year. Life's been tricky trying to seem like an NT to fit in and the like.

I think that's quite common, at least from reading some of the posts on here! Will try PM'ing you again, are if that work

 

[cherryq]

I first learned about Asperger's Syndrome at 17. I had been dx'd with anxiety disorders and so took to the Internet to find out about them. AS popped up in some of the results, and I related to a lot of the "signs" listed and the experiences of others that I found. I never told my parents or therapist what I found though. I was officially dx'd a year ago at 22. If I had discussed what I found online with my therapist, maybe she would have referred me sooner and I could have gotten accommodations during my undergrad program.

I don't think my parents know the full extent of how ASD affects me. I flew under the radar because I made good grades in school, followed the rules at school and didn't in trouble, and was simply thought to be "shy." I always played by myself at recess as a kid; I rarely joined in with playground games. My sister didn't live with my family growing up, so except for every other weekend, I was an only child. My mom has a mindset that if they had pushed me to go to school events more, interact with others, etc., that I wouldn't have the social struggles I have today. The thing is...I was in Girl Scouts, played soccer, and was in band. Forcing me to do other things wouldn't have made me any better at social interaction.

I think until recently (past several years), Autism has been thought of as a condition that affects primarily boys, so it affecting girls was rarely considered. As a whole, autism has also been misunderstood for a long time (not recognized by the general public as being a spectrum condition). One of my younger cousins (female) has LFA, and that is the only close interaction with ASD that my parents had. Besides her, they only knew of two others on the Spectrum. Because every person with ASD has a different set of strengths, weaknesses, and perspectives, only knowing of a few people with ASD can skew the perceptions of NTs. My parents didn't even consider that what I was telling them about me probably having AS was true until an adult in their church small group was diagnosed. If I had brought up AS when I first read about it at 17, my parents probably wouldn't have listened to me.