What an early diagnosis may have been like?

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First of all, I want to say I'm NOT a parent but I do have a keen interest in child development. I grew up undiagnosed as I was born in 1976 and just wrote a fictional piece about what my life MIGHT have been like if I was born in 1996 and got an early diagnosis instead.

I would like some feedback from parents with young teens to see if my story is even "believable"

Here's the link;
http://www.myaspergerslifestory.com/if_ ... _1996.html

Please tell me what you think,

Thanx,
Allie Kat

I found that story moving. Some parts seemed more real to my son's journey than others, but it also tells me a lot about what you wish you had had growing up. I so wish you could have had it.

I'm glad you liked my story. I'm actually starting to write a fictional book about a 10 year old protagonist with AS. My intention is to market this book both towards the NT tween market with a focus on kids who like to read "realistic school fiction" as well as Aspie kids around that age so they could have a character to relate to. I'm sure there are many people who still see Aspie behavior as stubborn and difficult despite the much greater awareness today so it's our job to keep creating awareness and spread the word.


Cheers, Allie Kat

BTW- If you're curious about what my real childhood was like, I have some subpages you can find by clicking the white triangle next to "My Life Story" at http://www.myaspergerslifestory.com/index.html

I think one thing to be aware of when writing the longer story is that social skills classes don't help that much with middle school peers, because no adult can decode pre-teen culture. As my son tells it, you learn to get by in class and with adults, but you are still clueless at lunch time. Friendships are hard, but firm school anti-bullying policies and a strong acceptance culture do keep the really bad stuff at bay.

Are you looking at giving your character any of the common co-morbids?

I'm planning to base my character on my own childhood experience which is mostly AS but with maybe a slight touch of ADHD but no other conditions. I think 10 is a transitional age. Most NT kids younger than 10 will want to please adults and are still very concrete thinkers; which means they can be talked into being a "buddy" for that weird kid if the adult talks them into it. Social skills are also not as subtle; I mean it's a lot easier to teach an 8 year old about waiting in line and asking for a turn on the swings than it is to teach a 13 year old how to look "cool" in front of her friends who are all talking about stuff she has no interest in which leads to my next point- Most kids from 12 to 17 think of adults as "uncool" and are constantly overthinking about what their friends think. 10-12 is when kids make that transition from the innocent elementary years to the turbulent adolescent years so I guess that's where the social skills classes start falling behind. My book is set in today's times; all the kids have "tryndee millennial names" with today's pre-teen issues such kids starting to get their own e-mail accounts as opposed to using their parent's emails so they could get more "privacy." My character is faced with losing her "best friend" to the popular girls while also dealing with a 5th grade teacher who does not understand her. WDYT?

yeah, most adults are not aware of teen culture- that's one of the reasons I posted my story to the teen message board as well to get feedback on whether or not my story "matches" what today's teens are like.

Based on what I've read on boards like this, it would still be unusual for a child age six to get an AS diagnosis on social issues alone. Those kids will fly under the radar in elementary school; assumed to just be shy, etc. Testing is often driven by either an unusually strong characteristic like an apparent obsession, anxiety, disgraphia, severe sensory issues, etc. Or super aware parents who simply insist their child be tested and have done enough homework and have enough knowledge of the system to be taken seriously. Big hurdles for kids like you were still exist, unfortunately.

I was anything BUT shy in kindergarten. The problem was I refused to participate and caused major scences in class when the teacher would tell me it was time to put the toys away and come to circle time. I was constantly demanding the teachers 1:1 attention and creating disruptions on a regular basis. The so called psychologist said that I was acting out to get attention and put me in special ed for emotionally disturbed kids in the middle of first grade because I was too demanding. I had no inhibation what soever about having a tantrum in front of my classmates when I didn't get the playground ball I wanted in first grade and when I was in fourth grade, I thew a huge fit when no one wanted to be my partner when our teacher told us to get into groups of 2 or 3. I wonder if I myself, have an undiagnosed co-morbid?

Read about childhood experiences experiences at:
http://www.myaspergerslifestory.com/kin ... aster.html (pre-K and kindergarten)
http://www.myaspergerslifestory.com/my_ ... years.html (grades 1-5)
http://www.myaspergerslifestory.com/my_ ... years.html (grades 6-8)

I was born in 1980 and I DID have an IEP. If you ended up in one of the classes I was in, neither the teacher nor one of the aides would have done any such thing as comfort you. If you had any type of tantrum you would have been restrained and dragged into a time out room, after which, if you calmed down sufficiently they would have explained to you what you did wrong and the conditions of your release from the time out room.

At better equipped schools you may have been sent to a time out room at the counselor's office.

You likely would have been medicated despite the fact that none of the medications were known to treat any of your problems, and forget social skills training because by the time anyone has that brilliant idea, you're almost 18 and the school would rather just fight about it until you turn 18 and they don't have to pay for anything.

Plus, since you're are female you probably would have been diagnosed with bi-polar disorder, borderline personality disorder, depression, ODD, or all of the above anyway, rather than AS.

In reality, I was born in 1976, so my childhood was more similar to yours than the one depicted in my fictional story. I did have an IEP and was "labeled" as "emotionally disturbed" and the so called psychologist told my parents that I only act out in order to get attention. When I was in a regular class, I used to be sent to the principal's office every time I had a meltdown or "defied" the teacher (without even knowing what I was doing for wrong) and they used to call my mother to pick me up. When I was in the special ed class, there were 4 staff for 12 kids so I got a lot of individual attention and mostly enjoyed school because my academic program was individualized and I was one of the "better behaved" kids in a class full of kids with more serious issues.

I believe that if I had been born in 1996, I would have been very likely to be diagnosed as AS very young as my preschool, kindergarten, and first grade behaviors were very autistic and most professionals were aware of AS in the early 00's. That's why I pushed my birth year in the story to 1996 in the story as opposed to the late 80s or early 90s.

I was born in the early sixties. Your stories seem so different that I can';t really tell how you REALLY were.

I could read well before I was 4. And in kindergarten I WAS reading books geared to teens. I never had to be told about the birds and the bees! I was in regular schools all my life. I had problems making friends, and STILL do! People will NOT understand things from your view even if it is clearly EXPLAINED to them! I guess so many lie, that they are too used to filtering out things that are VERY foreign to them. HEY, I wouldn't believe it if it didn't happen to ME! And I DO make over $100K, but I DON'T make $150K. 8-( One reason is because I would have trouble managing people for several reasons. I travel a LOT, and STILL hurt when they hit certain frequencies. I STILL hate most "newer" lights.

I agree with DW. A child with nothing but social issues would not be diagnosed with AS. If that's their only problem, they are not aspies. The adults would call them behavior issues and work on their behavior. If they were truely AS, they'd get a diagnosis at age 10 or so when other traits become more of a problem.

My son's AS traits were never enough of a problem until age 9. I knew something was off even when he was a baby. To teachers, he he was on target in all areas, including socially.

As time went on, he saw his differences and began hating himself. He was clearly highly sensitive, slow to warm (shy), perfectionistic, refused to do schoolwork and did not respond as others to dicipline. I homeschooled him and worked around his problems. As these became worse, I took him in for a diagnosis.

Again, it seems that I had more social impairments than the "average" AS kid and clearly "stood out" from kindergarten. As for the 150K a year in the story, remember I'm making that in the year 2026. I did some research online and I found out actuaries in non managerial positions make about 90K after 8 years on the job and I figured that with inflation that 90K in 2010=150K in 2026.

Yes, my real adult life and the one in the story are very different but the underlying described behaviors in the early years are the same; very severe social impairments but very advanced reading skills. But IRL, it was always attributed to my being "stubborn" and "acting out for attention" whereas in the story, the root cause of the problem, AS is addressed in a rather pollyanna-ish manner from first grade onwards.

Anyway, as a result of this forum, I'm going to e-mail my psychologist about the co-morbid topic because it seemed that I had to have more than just AS to behave the way I did back in my early school years and to still be struggling so much with underemployment today.

Thanks for all your inputs,

Allie Kat

Amazing how writing can really help us sort things out, isn't it?

I don't know if you had more going on. But I would worry despite all the advances in understanding, you would still get the same labels today: stubborn or attention seeking or emotionally disturbed. It would be interesting to delve into what it might take to make AS come onto the radar for a child that presents as you did, because none of us here want those kids to be mislabeled or misunderstood. But, yes, I do believe it is still a problem.

My son would not have his diagnosis if it were not for his disgraphia, that was the driving factor in getting any testing of any sort done. Before that came into evidence, we'd already done several rounds with preschool and then K about stubborn, bad parenting, in need of counseling, lazy, and so on. The world hasn't magically learned to spot ASD's, despite all the increase in awareness. I think that is what we are trying to tell you. Somewhere in your story this girl basically needs to get lucky, have that one special person who actually sees it, perhaps because they have a niece with the condition, or ?

Since the book is still in the outline stage with me writing vignettes here and there, I'm going to make some changes already thanks to the input. I'm moving up her age to 11 throughout the plot and maybe having her diagnosed at 7 or 8 because of a teacher who has a relative with AS and know how to recognize the signs.

Again thanks for your inputs,

Allie Kat