View Full Version : The Lost Girls: Girls and Autism


TygerSan
04-26-16, 09:48 PM
https://spectrumnews.org/features/deep-dive/the-lost-girls/

I found this article fascinating and disturbing at the same time. I've always wondered if I am slightly autistic. I definitely dobt qualify under the criteria as they are written, but I identify with so much of what Maya went through.

BellaVita
04-26-16, 10:19 PM
Thank you for sharing TygerSan.

It is sad that autistic girls often get misdiagnosed or missed altogether.

One weird and kinda sad thing is, I mark off each thing in the diagnostic criteria - fit it to a T. Yet I was still missed. Diagnosed with ADHD, OCD, bipolar-nos, "soft bipolar", anxiety, chronic low-grade depression. (not to mention my sleeping issues)

My mom was an actress, I wonder if that somehow passed down to me. It literally feels like "putting on a performance" when I interact with people in real life. I can fake NT for a good 2-5 minutes and then I'm exhausted. Any longer than that (which I've had to do before) and I will go into a meltdown and feel like the world is collapsing around me.

So many memorized scripts and scenarios to get me through. I spent hours upon hours reading books on body language and online articles growing up. I researched techniques to make eye contact. I must've known something was not right at a subconscious level. I didn't know that everyone else automatically understood this stuff.

Even with all of that studying - I constantly do not pick up on nonverbal stuff and misunderstand people often. And I have immense issues doing mental-tracking and figuring out what the other person might be feeling in real-time.

In real life interactions I have a slight delay when responding to people, because I'm going through formulas in my brain trying to pick the correct script. Someone pointed out to me this little delay. It feels like I'm trying to work out an algebra problem in my brain when I'm interacting with others.

Interesting things too - I got made fun of in school for rocking back and forth. I didn't even realize I was doing it. Not making good eye contact was something people noticed about me. Doing the wrong facial expressions at the wrong times and getting in trouble for that. (Smiling while getting yelled at by a teacher, for example) And for being weird. "You just have to get used to her" and variations of that are things people said about me.

I don't know if I'll ever get properly diagnosed, because it's so expensive to. I already know I'm autistic. The only time I think it might happen, is when I have kid(s) who will likely be autistic, and I will get diagnosed after they do.

Also - it's pretty obvious I'm autistic, and the people around me just accept that I am. So I don't really feel a need to get a diagnosis.

dvdnvwls
04-27-16, 01:33 AM
... it's pretty obvious I'm autistic, and the people around me just accept that I am.

Yes.

It's pretty hard to believe that your parents never suspected you were autistic, because it's so glaringly obvious. It's difficult to avoid the conclusion that they're either dishonest or not very bright.

I wonder how many other autistic girls might be unknowingly in that same situation.

Fortune
04-27-16, 04:09 AM
My parents had people outright telling them I was autistic and they refused to believe it. I think aside from dishonesty and not being very bright there's also denial or believing they have better explanations (my parents' explanations for me were not very flattering to me).

It is extremely frustrating.

I recall seeing a video featuring Lorna Wing a few of years ago (sad to learn she died in 2014, I had no idea) in which she said that the number of girls and women with autism is much closer to the number of boys and men than most people think, and I believe she was correct.

midnightstar
04-27-16, 05:00 AM
Even professionals can miss or misdiagnose autism or aspbergers syndrome. My family always wondered if I had aspbergers but I was never diagnosed and the professionals came out with "we don't think you have it"

(I apparently spelled it wrong but I think you know what I mean)

Fortune
04-27-16, 05:27 AM
Professionals often do. Before my diagnosis I'd seen at least one therapist as a child, and two psychiatrists, one psychologist, and two therapists over a 15 year period as an adult before being diagnosed.

I had the intense focused interests, the repetitive behavior, the need for routine, the inability to hold a conversation that wasn't actually about my interests (which doesn't even really count as a conversation, really), the literal interpretations (this is not an exhaustive or complete list), but: I also started speaking full sentences before I was a year old and taught myself to read at ~3 years of age. The former was seen as a contraindication and the latter was seen as a sign of my being "gifted" rather than being autistic, although hyperlexia is often associated with autism.

I can relate to a lot of what Maya describes, although my experiences are not a perfect mirror to hers.

BellaVita
04-27-16, 08:21 AM
My parents had people outright telling them I was autistic and they refused to believe it. I think aside from dishonesty and not being very bright there's also denial or believing they have better explanations (my parents' explanations for me were not very flattering to me).

It is extremely frustrating.

I recall seeing a video featuring Lorna Wing a few of years ago (sad to learn she died in 2014, I had no idea) in which she said that the number of girls and women with autism is much closer to the number of boys and men than most people think, and I believe she was correct.

I really wonder if at one point my old psychiatrist thought there might be "something up" with me, when he asked to question my mom in the back room about my childhood and if I had reached my developmental milestones.

I know I've told this story before, I just feel like it's important.

As my mom and I followed him to the back room, I told my mom [since I knew what it was he wanted to discuss with her] "should we tell him about how I didn't talk to anyone but you for several years, and how I used to line up my toys[every single night]?" and she shushed me and silenced me, and when she got into the back room (I was with her) she told my psychiatrist "she had a very healthy and normal childhood" which was a complete lie. (I didn't suspect I was autistic - I just knew that those things weren't "normal", and I knew that autistic people sometimes did similar things)

Another weird thing - my mom used to point out autistic characters in shows to me for some reason. She'd get excited to show them to me. She didn't do this to my brother, just me. I wonder if she knew.

Fortune
04-27-16, 08:56 AM
Well I mean your parents from what you said could easily be dishonest. I just questioned the general idea that someone would be required to be dishonest or not very bright to not notice someone is autistic.

Cyllya
05-01-16, 10:44 PM
Even professionals can miss or misdiagnose autism or aspbergers syndrome. My family always wondered if I had aspbergers but I was never diagnosed and the professionals came out with "we don't think you have it"

(I apparently spelled it wrong but I think you know what I mean)

Yeah, I have a lot of autism-like problems, so I recently went to a psychologist about this. Normally, I could agree with the psychologist's decision that I "have autistic traits" but don't qualify for a diagnosis, but I had some definite beefs with the diagnostic procedure:


The ADOS test is designed to detect problems with social interaction and repetitive behavior. In the psychologist's report, he noted that my social response was "somewhat awkward" and that I was repetitively fidgeting with my clothes, but he discounted both of those as being related to anxiety.
The fake social interaction seemed easier than real social interaction. (At one point in the report, he mentioned that I gave inappropriate personal information, but unless my social skills I are way worse than I thought, I think I must've misunderstood his question.)
Out of the whole four-hour appointment, there were maybe two questions about adult-level adaptive behavior. I stressed that I have trouble functioning and that I'm incapable of living independently, but the report still said I have no problems with daily living.
The psychologist seemed to think I paid hundreds of dollars for this assessment due to some kind of idle curiosity. He definitely didn't seem to be taking me seriously.
They were supposed to interview my roommate about me, but they forgot. I tried to remind the psychologist about this twice, but he just kind of nodded and smiled, and I later realized that he just literally didn't understand what I was saying. Not sure why they thought I brought my roommate with me, but I'm guessing they figured it had something to do with all that anxiety they think I have.
Even if they had interviewed my roommate, it would have been with the Vineland Adaptive Behavior Scale, which only measures issues up to age 18.
He seemed to discount anything I said my mom couldn't corroborate, even regarding things she wouldn't be present to witness. (How the heck would my mom know how I behaved at school? Theoretically, the school staff could have told her, but they have much bigger concerns than how weird one kid is. Sometimes I accidentally bullied other kids, but it was in a way that they would have a hard time reporting it.) Even when I was a kid, my mom and I didn't spend much time together, and she has a pretty skewed concept of normal anyway.


And I can't think of a reason why it matters, but for some reason it really bugged me that his report referred to my ex-fiance (who I was with for four years) as someone who had been my boyfriend for a short time.

BellaVita
05-02-16, 03:41 AM
Ugh Cyllya that sounds so frustrating!

Perhaps it would be better to see a psychiatrist who specializes in autism?

Looks like things got messed up for you.

ginniebean
05-02-16, 12:33 PM
I am pretty sure I have autism, I can see myself in maya and my autistic clients and family members clearly.

I remember meeting a 5 year old girl with autism, and it was like having one of those birds eye view out of body experience. I identified with her so strongly that there was no difference between us. Her confused and bewildered expression and something else I have no way to identify made me see her and think omg that's me, followed by, what that poor girl will have to go thru.

Anyway, thanks for posting this.

BellaVita
05-02-16, 07:03 PM
I am pretty sure I have autism, I can see myself in maya and my autistic clients and family members clearly.

I remember meeting a 5 year old girl with autism, and it was like having one of those birds eye view out of body experience. I identified with her so strongly that there was no difference between us. Her confused and bewildered expression and something else I have no way to identify made me see her and think omg that's me, followed by, what that poor girl will have to go thru.

Anyway, thanks for posting this.

Hey then, a very warm welcome to the autistic community. :)

Fortune
05-02-16, 09:17 PM
Ginnie, from things we've talked about I am not surprised you have come to that conclusion.

Adenosine
05-28-16, 11:52 AM
Professionals often do. Before my diagnosis I'd seen at least one therapist as a child, and two psychiatrists, one psychologist, and two therapists over a 15 year period as an adult before being diagnosed.

I had the intense focused interests, the repetitive behavior, the need for routine, the inability to hold a conversation that wasn't actually about my interests (which doesn't even really count as a conversation, really), the literal interpretations (this is not an exhaustive or complete list), but: I also started speaking full sentences before I was a year old and taught myself to read at ~3 years of age. The former was seen as a contraindication and the latter was seen as a sign of my being "gifted" rather than being autistic, although hyperlexia is often associated with autism.The list bit reminds me of an anti-ADHD video that tried to use Jacob Barnett's prodigious math skill as evidence that he wasn't really autistic. When that's probably a symptom too, albeit a rare one.

BellaVita
05-28-16, 02:16 PM
The list bit reminds me of an anti-ADHD video that tried to use Jacob Barnett's prodigious math skill as evidence that he wasn't really autistic. When that's probably a symptom too, albeit a rare one.

I really look up to Jacob Barnett. :) It's mesmerizing watching him write out those long math problems.

He's so cool.

Adenosine
05-29-16, 09:50 AM
I really look up to Jacob Barnett. :) It's mesmerizing watching him write out those long math problems.

He's so cool.If we count savant* abilities as a symptom, his autism has developed into something that arguably isn't a disorder in the conventional sense, despite severe early impairment. That alone is an inspiration, though his situation is at least as rare as genius in neurotypicals.

*I'm aware that some people don't like the term, but I've seen the alternatives anger others as well, and I prefer not to make it difficult to speak of those skills, given that they are one of the few clearly-definable positives.

BellaVita
05-29-16, 04:09 PM
If we count savant* abilities as a symptom, his autism has developed into something that arguably isn't a disorder in the conventional sense, despite severe early impairment. That alone is an inspiration, though his situation is at least as rare as genius in neurotypicals.

*I'm aware that some people don't like the term, but I've seen the alternatives anger others as well, and I prefer not to make it difficult to speak of those skills, given that they are one of the few clearly-definable positives.

Hmm I don't think we can determine whether he is still impaired or not, we don't see him in his day-to-day life. What someone presents as on camera is often not giving the full details.

I don't see what you described as an inspiration. Or I just don't see things the same way.

(Sorry if my wording is weird - I just woke up and brain is not "on")

Fortune
05-29-16, 06:17 PM
"Savant" is pretty much the worst (well second worst, because "idiot savant" is even worse) word you can use for such skills. There are better options, and the best option isn't "terminology that is guaranteed to annoy someone."

What's wrong with calling it a gift? We have no problem with talking about neurotypicals having gifts, but when an autistic person has a gift, it has to be a symptom. How biased is that?

Roundmouth
05-29-16, 08:13 PM
Nothing wrong calling it a gift.

However, if I'd have some extraorinary talent, I'd definitly prefer 'savant' before 'gifted'. If only to accent that I'm not normal. Some kind of autistic pride... Like this is not only a talent despite of my twisted mind, but something really freaky, a scary superpower that wouldn't even be compatible with a standard silly little 4-bit brain like yours - nyah, nyah, nyah, nyah, nyah!

Adenosine
06-13-16, 07:06 PM
"Savant" is pretty much the worst (well second worst, because "idiot savant" is even worse) word you can use for such skills. There are better options, and the best option isn't "terminology that is guaranteed to annoy someone."

What's wrong with calling it a gift? We have no problem with talking about neurotypicals having gifts, but when an autistic person has a gift, it has to be a symptom. How biased is that?If those skills are on any level connected to autism, it make sense to give them a specific name, and "savant" is more or less the official one. I prefer it for the same reason I prefer "hyperlexia" to "good at reading", though that term could be considered biased for the very same reasons.

Fortune
06-13-16, 07:13 PM
If those skills are on any level connected to autism, it make sense to give them a specific name, and "savant" is more or less the official one. I prefer it for the same reason I prefer "hyperlexia" to "good at reading".

It's just a way to take gifted autistic people and pathologize their gifts. "Oh, that autistic person is good with music because she's a savant, not because she's gifted like any other person could possibly be."

Hyperlexia refers to a specific kind of self-taught reading that includes difficulties in verbal communication and comprehension related to autism, and every instance of self-taught reading is not hyperlexia.

Adenosine
06-13-16, 07:30 PM
It's just a way to take gifted autistic people and pathologize their gifts. "Oh, that autistic person is good with music because she's a savant, not because she's gifted like any other person could possibly be."What if they aren't gifted in the same way that other people are? Asperger, Kanner, and Wing all noticed some memory talents, and conventional savant abilities seem to derive much of their power from exceptional recall. If they are in any sense related to the disorder, should we not acknowledge them as such?

That aside, I don't think you can attribute that much malice to everyone who uses the term. It is easily acquired by reading medical sources, and I have seen people praise autism on quite a few occasions, often in terms more glamorous than it necessarily deserves. ("He has Asperger's? Those people are geniuses, man!")
Hyperlexia refers to a specific kind of self-taught reading that includes difficulties in verbal communication and comprehension related to autism, and every instance of self-taught reading is not hyperlexia.By giving it a specific word, we are already turning it into something different, a syndrome instead of a random gift.

Fortune
06-13-16, 07:35 PM
What if they aren't gifted in the same way that other people are? Asperger, Kanner, and Wing all noticed some memory talents, and conventional savant abilities seem to derive much of their power from exceptional recall. If they are in any sense related to the disorder, should we not acknowledge them as such?

That aside, I don't think you can attribute that much malice to everyone who uses the term. It is easily acquired by reading medical sources, and I have seen people praise autism on quite a few occasions, often in terms more glamorous than it necessarily deserves. ("He has Asperger's? Those people are geniuses, man!")

I wasn't attributing malice to everyone who uses the term. I was attributing the use of the term to the tendency to pathologize everything autistic people can do. It's just plain not enough for some people that autistic people can be gifted, so those gifts have to be pathologized and described as symptoms. Not cool. Not malicious - more condescending than anything.

By giving it a specific word, we are already turning it into something different, a syndrome instead of a random gift.

The point being that not everyone who taught themselves reading at a young age necessarily has hyperlexia, and blanket identification of autistic children who are self-taught readers as hyperlexic is likely inaccurate.

Adenosine
06-13-16, 08:09 PM
I wasn't attributing malice to everyone who uses the term. I was attributing the use of the term to the tendency to pathologize everything autistic people can do. It's just plain not enough for some people that autistic people can be gifted, so those gifts have to be pathologized and described as symptoms. Not cool. Not malicious - more condescending than anything.You're right, on some level, but the same thing could happen to any term we choose. We have a mental condition shared by less than three percent of the population. Ignorance will occur almost by default.
The point being that not everyone who taught themselves reading at a young age necessarily has hyperlexia, and blanket identification of autistic children who are self-taught readers as hyperlexic is likely inaccurate.And not every autistic child who's good at something is a savant, but there appear to be some patterns that vary from normal talent. Can I not use the conventional psychiatric term to describe such people? And are there not benefits to it as well?