Mom wants more info on Transition to Adulthood

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I have heard that many people who have Asperger's have an emotional age that is much younger than their age. Someone at Children's Hospital in Denver told me that it is approximately 10 years younger. So be patient with yourself



My son only wanted to eat 24/7 and have nothing to do with me. He also was extremely quiet and rarely cried (except when I picked him up) when he was a baby so I know what you mean.



I doubt that you were unteachable, but that you were not ready or that people did not know how to teach you. Being unteachable is way too harsh.



I took my son out of public school and put him in an online school because the teacher's didn't understand that Joshua could do the work, he just couldn't retrieve papers that he had finished, or do assignments that had too many steps, or assignments that took place over a long period of time - even if they had intermediate goals. Joshua just didn't have the executive functioning skills to do these things. And then sometimes he just would 'blank out' and fail something - but not because he didn't know, but because he just couldn't pay attention during that particular hour. And then he would read. The class would start and before the teacher finished her description of the lesson, he had finished the homework, so he would read for the next hour and twenty minutes. I asked the teacher to give him more/different work, but she refused saying that I should be proud that my son read so much.

Mostly I am glad that your mother was able to come to your aid in order to take you out of school and say that you were not ready. I have a friend who's son is also very bright, and when he thinks of going to high school (he is 16) he throws up. Last year the teachers just said to him - don't come to class, do the work, but don't come to class. Like that was a good idea . I think moms know best about what to do for their kids - like your mom did for you.



Yea!! !



I am not a religious person at all, but I have seen that church is so much more than religion. I have seen church do wonders for people of all ages. It is a social gathering of people who have something in common and because they meet each other every week, friendships form. I am so glad you were able to make friends - but now that I have read the rest of the sentence - they did not seem very nice to you. I am so sorry. kids can be so cruel especially at that age.



I think you have more skills than you think you have! You were able to take care of yourself!! !



Yea! You found a passion!! !



It is amazing how sometimes you get away from your old neighborhood, and people embrace you.




Love hurts. Damn, it hurts. And then you have to go back and be in the same city - darn, I am so sorry. I hate that about love when you are young. It gets better as you get older, but it still hurts like all "get out".




Most people don't like labels. I kinda do though. Then I know what is inside the label and what is not. I know what I can change and what I cannot.



I was going to suggest that you find a disability office or the equivalent in your country. I am glad they are hooking you up with people who will accept you just the way you are. Perfect!

I also have another plan - to become the next J.K Rowling. - from rags to riches type thing. My mum is even encouraging by saying 'well if they don't give you a job you'll have to make money in other ways.'[/quote]

Being the next J.K. Rowling is a long shot, but J.K. Rowling didn't know she was going to be a sensation. I think you are more of a late-bloomer than anything else.

Thank you for sharing your story. Sincerely, I mean it. You seem to be a wonderful person who is just opening her petals.

--Ellen

Ellen, your including the "what could they do better" questions works fine.

Hello Ellen and warm welcome to WP..
I think I roasted you when you first posted last time. I can be very blunt if I do not put in a conscious effort to consider what I am writing, so apologies also. I have that bluntness and rudeness at times, and I mean no harm...it just comes out with my ASD.

I am a late bloomer. I only really grew up (in parts) around the age of 36 and I am still a lot like a kid, with my single kids bedroom and single bed with teddy on it and my little dresser with small elephant objects, plaster casts of my teeth, and brass objects...plus a few other things like animal teeth, seed pods and other delights.
My ex partner helps support me to live. We have a kid together and I struggle to do the basics of life. I can do them for a little while but things can fall apart easily and quickly with me. I need a lot of structure and routine.
Still, I am better than I was years ago.

That is my guess. I know that I didnt talk till I was 2 and a half, and I spent a good deal of my time lining up toys and avoiding other people. Both my first grade teacher and kindergarten teacher recommended that I repeat a year of school because I didn't socialize well. My speech is also a dead give away. I can't put together 3 sentences without getting words messed up and things coming out in the wrong order. And of course how many 6 year olds memorize statistics about Apollo era rocket engine designs? But yet despite HFA/AS describing me perfectly, it wasn't until recently that I looked up Isaac newton online that I found a link to asperger's syndrome and finally figured it out for myself.

Back when I was young the idea was that if you weren't ret*d, then the only thing wrong with you was a lack of effort on your part. There was no ADHD, AS, dyslexia, IEPs, or anything like that. At least that is what I grew up with, other people may have been in different environments.

There's something important to add:

Just say your son has an academic IQ of 130, it's most likely that his functional IQ is far lower than this (probably 60 to 70 if I were to guess), which means your son would function at the level of someone with mild mental retardation. Most with AS score around 60 to 70 on their functional IQ no matter what their academic IQ is.

You could ask the professional he sees to give him a functional IQ test (Vineland Composite), which would show you his strengths and weaknesses far better than the standard academic one (which only applies to how well you can do at schoolwork for the most part).

A few people were actually diagnosed before that year. I know a women in my group and she was diagnosed in 1993. I know several other people online who were diagnosed about that same year. It was the DSM-IV criteria for it that didn't come out till 1994. There was still the ICM-10 and the Gillberg created in 1991 and the other one that was created in 1989.

When I had an interview for my current job, I told my interviewers a white lie, saying "I'm kind of shy" before they hired me.
I also had a good resume and work experencie, so I said the shy thing so they knew that I'd be kind of odd , and so far it's going good .
Good luck getting a job.

Yes, I've had good luck telling people I'm introverted, so they don't take it personally when I zero in on some work related task and lose track of their existence.

Also, they are much less miffed about my not recognizing them if I tell them ahead of time that I'm horrible at remembering faces. People can relate to that because plenty of them are horrible at remembering names.

I'm not so sure of that. I agree that someone with a speech delay, repetitive actions, lack of social connections would probably have been diagnosed autistic even 40 years ago; but most of the time when you had autism + apparent MR together, the cases got dumped into the "mentally ret*d" box. A lot of people are being re-diagnosed even today. I saw this one study that found over 500 such people in a couple of institutions in Texas, who fit criteria for autism but had been diagnosed mentally ret*d (most of them were mentally ret*d as well as autistic), and then re-diagnosed later on (the study was testing various diagnostic tools to detect autism in mentally ret*d adults; the institutions had put these people under that heading and then re-evaluated later on to give them both diagnoses). Anyway, it seems our MR diagnoses have gone down at a pretty steady rate since autism became well known; a steeper decline than figuring out PKU or better nutrition can account for. It's my guess that some of those cases are being re-categorized Autism.

re. Functional IQ: Yes, I agree with this. It's very possible to have a high capacity for academic work and a low capacity for various daily living tasks. I function at the level of about a twelve year old, currently--but that's only an average, since I've got some skills above and others below that level. (I really think I'm not far past six in emotional control, for example.) Age equivalents and thus IQs only really go so far in showing how good someone is at doing various things; it is probably a better idea to try to identify exactly where the delays are, instead of trying to apply some sort of global figure. For example, I wasn't ready to learn to drive until my mid twenties, still can't hold a job, but am able to navigate the complicated legal maze of becoming a naturalized US citizen and getting help to get through college (many people hire lawyers for these things). I learned how to clean a room when I was about twelve but wasn't able to consistently apply that skill until last year or so. Autism generally means a lot of skills at a lot of different levels. Just because your "functional IQ" is low--yes, you should expect it to be in the mild MR range for someone with Asperger's--doesn't mean any particular skill you can point to will be at that level. Oh, and just to point out: People with mild MR can almost always live independently. To say that most people with autism are delayed in daily living skills doesn't mean you should ignore just how much you can do even with that delay.

Callista,

I recall that while the actual scores for those with AS were in the MR range on the Vineland, they still had the splintered profile of academic IQ tests. For example, they may have more trouble with independent living than someone with mild MR, but in other areas they're normal. Which points to the heart of ASDs, where skills will be all over the place, compared to an even level of those with MR or a normal neurological pattern.

So yeah, it's not the greatest tool, but it's much better than how people say that if someone is bright, they should be equally well at everything else as they are at academia (it's funny, if you're bright and a paraplegic, no one will expect you to walk.... The joy of hidden disabilities).

i'm not quite sure how interviews work. my parents would have to be there with me. can you get a serious job with your parents there vouching/talking for you in an interview or is it hopeless

I've changed a lot since I was 15 (and my autism always kept changing before that too) so while I'm 21 and remember everything in the past few years clearly, I'm probably no good to answer the survey?

Hi Ellen

I'm sorry to see what happened in the other thread but I think a lot of aspies who only been diagnosed in adulthood may have experienced a lot of misunderstandings in their lives. This combined with miscommunication and not receiving an accurate picture of what was going on with your son may have caused some riled up emotions. I do think that some other parents of AS kids may identify with your sons behavior though. After talking to one or two parents (and sitting in a parents group at one time at least) of AS kids, I can tell you that I think most of them only want the best for their kids regardless of special needs.

Anyway back to the current topic. I haven't answered your survey as I'm a little unsure how to answer some of your questions, but maybe I have to thing about them a bit more. Well let me tell you my story.

When I was much younger I went to a Primary school for children with learning disabilities. I didn't know this at the time but this school told my mom and dad that I would never rise above a Std 1 academic level (in our current educational system here in South Africa it would now be called grade 3 and if you from the states I believe it would be called third grade). Now how did I turn out? Well last month I submitted my dissertation in astrophysics for the degree of Master of Science to the Faculty of Science in the University of Johannesburg. The title of that thesis was "Theoretical Analysis of the Vibrational Dynamics of Neutron Star Interiors" and it has been sent to the external examiners and I am still awaiting the results. If you are wondering how I got to this point, more detail follows.

Lets start from the beginning. When I was little, it was noticed by my mom that I was a bit different from other children, such as sitting alone and not playing with other children and so on. When I was around 3, it was realised that I had a congenital cataract in my right eye. I went to hospital to have an operation to get that cataract removed. That's why I don't have a lens in that eye and don't see with it. Actually that's not terribly accurate, if I close my left eye I can partially see with my right eye but what I'm told is that it's difficult for my brain to integrate the images from the two eyes. For that reason the image of my right eye gets shut out so that I only see with my left eye. Anyway the fact that I only see with one eye is not the only thing people were worried about because as I stated earlier there was something different about me.

A friend of my mom's suggested sending me to the primary school I mentioned earlier. My mom was teacher and she might of suggested (I'm not entirely sure I think I'll ask her) that I had autism but they didn't agree as I could talk. Anyway she decided to get a diploma in minimal brain dysfunction in an effort to understand me. As she became a teacher of that school, they hid away my files (I think they were scared that she would do some snooping). As they could not work out why I was different, apparently some people called me a KDK (Kind of Different Kid), at least thats what my mom says. Towards the end of my years at school there they had suggested to my parents to remove me from the education system. I was not getting much education there anymore in an any case, but at the same I was messing around with a then old computer at home. I had an old Acorn BBC Micro and I found the manual that came with it that I was reading. It had a form of Basic called BBC Basic built in. So while that school had told my parents that I was ineducable, I had taught myself to programme on that old computer. That was when I was 11 or 12, I can't remember when.

I turned 13 in my last year at that Primary school. It about then that I was able to talk about my psychologist at the time (I think probably the third one I had but I'm not sure) about my experiences. It was also about the same time that my grandparents were being moved out their house to a retirement village. My grandmother was getting Alzheimer's Disease and kept losing her short term memory. Apparently my grandfather also told him about me and no one knew why I was different. Anyway this psychiatrist also liked my grandparents house in Pretoria and decided to buy. My grandmother who kept losing her memory, also kept unpacking her clothes in that house that my mom newly packed. So the psychiatrist I told you about came up with the idea that he would move into each room of the house and unpack his stuff as my mom packed my grandparents stuff and it worked. I met the psychiatrist because I occasionally went with my mom to pack up my grandparents stuff. After meeting me, he thought recognised the traits that I seemed to show. After thinking about it for a while he decided to talk to my mom. He showed her his doctoral thesis on Asperger Syndrome and the next time I saw my psychologist, we went through the criteria together. This was before AS was an official diagnosis and I was officially diagnosed as soon as the diagnosis became available. Up until now I still see that psychiatrist now and then, although he no longer works in the area of autism.

Anyway, my mom didn't believe what that Primary school said about me being ineducable so the psychiatrist I told you about (I don't want to mention his name), suggested she find another school for me. My parents looked and they did find one. This was a school for adolescents with learning disabilities and provided education from Senior Primary school to Matric. After I was there for a month or two, I was having a few problems and they initially thought maybe the people who told them remove me from education might have been right and the started looking for another school with special education. It turned out that I was just adjusting to the new environment (I don't like change much). At the end of that year, I had got a certificate from the school for almost every subject at prize giving. I went to that school for 7 years until I matriculated.

Unfortunately, that school didn't offer all the subjects at the level I needed to start going to University so I tried applying for a bridging year at the University of Witwatersrand (Wits) for BSc. I was given an assessment test and they phoned back after it was saying that I scored well above average. Unfortunately, as soon as they were told about my subjects and my disability, they rejected me. At the time, my mom and dad also felt that I needed to get used to large lecture rooms full of students (I don't like crowds much). So after I was rejected for the bridging year at Wits, they enrolled me to do analytical chemistry at a technikon (technical college). This didn't work out very well for various reasons. For one, they didn't give me the support I needed. I also personally didn't like the fact that they only teach you stuff that you needed to know for particular career. One of the lecturers complained about me because of kinds of questions I asked. There was also a time when I spilled acid on myself during one of the practicals. When I went home that afternoon my mom asked why there were holes in the long pants that I was wearing and I told her. When those pants were washed, the water reactivated the acid and they came out of the washing machine hanging in shreds.

I was at that technikon for six months before my mom contacted the the Rand Afrikaans University (RAU). Which is now called UJ (University of Johannesburg) after a merger with two other campuses. After she was asked what my disability was, the lady on the phone advised my mom to contact the rector of the university directly because the people responsible for disabilities may not understand. It turns out that the rector at that time had an autistic son, and so decided to give me a chance. I had a meeting with the dean of the science faculty and the head of the physics department and then spent the rest of the year doing a bridging coarse and I also rewrote a matric paper on the level I needed for entrance. I succeeded in getting the marks I needed for that year. However, incidentally they also raised the entrance requirements so the dean of Science Faculty decided to register me for only a few subjects for non degree purposes to see how well I would do the following year. I passed those subjects with distinctions and the dean converted the those subjects from being for non-degree purposes to contributing to a full BSc. I completed my BSc and continued with the BSc Honours degree. To explain what that is, here in South Africa people can get qualified jobs with a three year BSc degree. The Honours year is equivalent the fourth year of the four year BSc degree you have in the states.

Following my graduation of the BSc Honours degree, I started on the Masters project that I just recently completed. I haven't received the results yet but my supervisor green-lit it for me to submit so I'm confident that I will do fine. As of now I'm also waiting to find out if I can start working by giving tutorials or marking class tests but I'll see. I'm also planning on doing a PhD.

Best of luck

Regards
Jonathan

I didn't realise my post was so long. If its too long, you could try printing it out.. You may find it to be worth a read.

jono - your post was long and magnificent and inspiring. Good luck in your life journey. You are a walking example of courage, perseverance, commitment and spirit.

Your story just goes to show what can happen when there are loving and committed parents, a kid with autism who does not give up, and good people around to help here and there.

great to read.

^ Thanks