I'm 37 yo. I'm a divorcee and a father to 3 amazing children. 2 boys and a daughter. I'm not sure if I'm here looking for advice or if I'm just simply getting this all off my chest. My whole lifes a complicated mess of confusion and so is that of my 2 sons.
My oldest son:
This was the first time the words "asd", "autism" and "aspergers syndrome" were used around my family. My son was diagnosed at the age of 9 with aspergers after 5 years of study. We hadn't been expecting it. We knew something was wrong and so did the school and the psychologists but we just didn't realise that's what was wrong... and it opened Pandora's box.
He's really bad with it. He has no friends. He hides in a world of computer games. He finds it impossible to join in groups. In fact he hits panic attacks. He's prone to emotional outbursts in particular if his routine is changed. He has pretty severe learning difficulties along the lines of dyslexia but he is a total genius with computers. This is a boy who has returned an iq score of 127 at the age of 10, who since the age of 5 has been able to do stuff on computers that most people out there wouldn't know were to start. It's like he was born with the knowledge. Computer games and their worlds is his protective bubble. If you try and talk to him he will get uncomfortable, ignore you and start banging on about computer games. I'm the only person in the world he'll hold a straight, normal, civil conversation with. He will talk normally to me but not to anyone else. Everyone just gets that protective bubble.
My youngest son:
Was considered fine until he hit the age of 5. The school psychologist noted he was very similar to my oldest son, in particular the obsession with computers and computer games. They suggested he was probably just copying his older brother until just recently. They spent a year comparing them and came to the conclusion that my youngest son only shares 40% of similar traits with his brother. That he has his own, clear traits that fall in the spectrum. So he's not copying his brother and now they have him under testing as well.
Myself:
From an early age I struggled with speech, written words (dysgraphia), emotional out bursts, depression. My earliest memory of severe depression was sitting on the stairs at the age of 5 in a total mess and not understanding why I felt like that (cause nothing bad happened) or what was actually going on.
From the age of 6 they pulled me from school once a week and sent me to psychologists. Please note this was in the early 80's. They told my parents they thought I had adhd but that it was still under investigation by the bma and they weren't allowed to diagnose it as a condition yet. Autism wasn't a recognised condition back then either.
All through my early life, even till today, I was a total loner. I hated people and never really fit in. I only have a small had full of people in my life I let in close. I always ended up fighting everyone at school. The school told me I was a good guy and they knew I was a bit different and getting bullied but there was points they had to suspend me for this. They only ever put me under learning support for partial dyslexia (what turned out to be dysgraphia).
I hate to admit this but it came to a head. I couldn't handle being different and outcast. The school warned me that although they knew why I was lashing out, if I didn't get control of it they were going to have to pull me from school and get me professional help. This scared seven shades out me. I became obsessed with trying to calm down and fit in.... this lead to me smoking cannabis. It was only ever to try and join in the group at first but what it did was it took the anger and emotions out me. It dumbed me down and calmed me down. I suddenly started fitting in. I suddenly found myself the centre of the group... so I started self medicating... for 25 years straight and still counting...
At the age of 21 I had a severe breakdown. I was sectioned and was diagnosed bipolar affective. The weed might have made me seem like I fitted in but inside was still a mess and things that happened in my life... I couldn't cope with it all. I've went full blown schizo affective 3 times in my life and am a rapid switching bipolar. My marriage fell apart. I've lost it so many times. Some days I wake up and can't believe the things I've done the day before. I'm constantly punishing myself.
The point is recently, because my son was diagnosed as having aspergers, they started looking at all of us. They explained that autism has a hereditary side and that it can pass from one generation to the next. That my older son has it. They believe my younger son has it and that they had pulled and studied my school, medical and mental health records and they believe I'm autistic as well... so they have me under a psychologist and support workers, trying to establish a diagnosis on me and they're currently comparing me to my sons... because all 3 of us share almost identical traits that fall in the spectrum. And they tested my iq as well using 4 of the 7 mensa algorithms... I apparently am gifted because I have an iq of 138... and yeah I'm deep involved in computers as well. I've made and released computer games and software, I'm mentioned in the special thanks section of the credit role for 4 triple a games for work I did to help them develop artificial intelligence routines and artificial life. I'm also a published poet, an artist and a musician... but yet like my son, I come across as totally dumb and backwards when talking... cause I've always struggled to get my feelings or point across.
Look, i'm terrified of this. I don't even know where to start. To be told that all the issues I've had all my life have been missed completely or misdiagnosed... even worse. That I'm to blame. That I've passed this on to 2 of my 3 children and have cursed them to the life I've had...
Fyi my daughter they ruled out. Shes totally normal, happy and well adjusted.
Sorry I'm going on here but this is whats running through my head. My head doesn't know when to stop. Tons of information and data run through it at a million miles an hour every day. Way more than I can handle. That's where my best work comes from. In amongst all the madness and rabble comes brief flashes. Moments of sheer brilliance and genius that I have to grab on to hard and get down before they're gone cause so much runs through my head, it's impossible to keep it all there.
I don't even know why I'm doing this... I probably shouldn't be doing this... but I feel lost
Written by
Joseph-burke
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Having Aspergers isn't that bad, and it's not a curse at all. Most successful people have Aspergers and since you know what it's like first hand you can teach your sons what you have to go through.
There is absolutely nothing wrong with being on the spectrum as long as the support is there, things can go brilliantly. I work with a high functioning boy with asd, and he is a handful but I can see that with the right support he will go on to do great things. Like yourself, being able to assist on triple a games is a dream my other half has. Like you and your boys he is obsessed with computer games, and currently at the age of 23 he is being assessed for autism. At school they labelled him depressed and adhd, leading to no support, he's also dyslexic and he unfortunately for excluded, placed in a PRU and has no passed GCSEs. Hopefully if he gets his diagnosis, he will get the right support and we can help him find something video game related that he can do.
But I totally can see how distressed you are with certain aspects, just like my OH.
Without a DX life is hell. My son is being emotionallly abused by his fathers family and without a dx they will not stop, Its been horrendous trying to get anyone to listen
They are idiots and your son is better than people like that. It is hard to get anyone to listen but you have to be persistent. Once things get moving, that's it. Don't back down and let it drop. Oh and don't get angry or shout. That gets you no ware. Get clever. Talk to them on their own level. Talk to them using language they understand. Be insistent and make it clear you aren't going to go away until they take you seriously.
GCSE's aren't that important in computer games. All you have to have is that creative thirst and a broad imagination. Figure what he's good at that way. For example, would he be good at writing computer code or is he better suited to story telling, music or art work. Then get him to focus on that. There are mod and dev communities out there with amazing info to help him get on his feet and learn it all from the ground up. Once hes got it pegged, perhaps with a few recognised projects under his belt, he can expand from there and try to get work for a games company. Better still, even set up one of his own if he's good enough. Indy games companies are doing brilliant at the moment. There's a huge market and demand to fill and you can do it all from your own home. Zero outlay if your good enough.
This is an awful lot of tough stuff for you to handle. But you are high achieving. Your sons probably will be too. They might do it all from their bedrooms on a screen - but thank God they were born now! They are perfectly fitted to excel in the present world, and to have on screen friends.
Your daughter must be having a difficult time too. I know she's fine but it's a lot to cope with. My daughter found having one Asperger brother hard to deal with.
Try to focus on what is going well, what they do well, what you do well, and also, don't disregard the help of pharmaceutical drugs. Temple Grandin says they really helped her.
You are not alone. And the boys are lucky to have a father who perfectly understands them.
It does get to my daughter but she copes brilliantly. She's a rock and very strong. She fusses after the three of us like a little mother and looks out for us. I've seen days where I have a bad day and i'll try hard to hide it from them but she just knows. She slips up next to me. Cuddles me and tells me i'll be alright. I love her to bits for that. She even looks out for her brothers and stops them being bullied. She deserves more praise than anyone in this.
OMG I could have written this...... I am 46 now and in process of being dxd..... and my two sons... same. I have been worried sick for years. Eventually its all cost me my marriage but all ok for me now but.... if you want to talk to me, please reply. I had to answer this message. I cant give advice on here too much to tell. And the system processes Ive been through are really worrying. My kids have both been let down... mainly during early years. No one listened to me,
Hey there Superdad! You're doing brilliant stuff. Never doubt yourself. Sounds like you could do with some people around who'll be there to help you when you're in a dark corner, but who won't intrude into your precious good times unless you invite them. You did a fantastic job in writing down your good and bad experiences and I sincerely hope it helped you. Just look back at what you have achieved and the difficulties you've overcome in a time when autism and aspergers were unknown to most of the world around you. I hope you get some comfort for yourself too in getting to see the right people for your sons; that is an achievement in itself. It seems at times to be a never-ending round of specialist teams, therapists, various doctors and co-ordinators, all seemingly asking the same questions. Hang in there, you're marvellous and you're helping all those who come after you, not just your own family, more than you'll ever know.
I'd just like to say thanks to everyone for your words of support. I'm kind of taken back here reading through this lot. Also apologies for being away so long. I posted that on a bad day then freaked out a little when reality set in. Left me feeling embarrassed and afraid to read the replies and for what. There isn't a bad word said here. Thank you. All of you.
Hey, I really sorry for what has happened, me and me hubby just went though the same stuff with our son and it has given us a lot to think about , your not alone email me Karen.gillett@Hotmail.co.uk
I feel you! I am 22 years old now and been wondering why it is so hard for me to cope up with things. Ever since I was a kid, it was hard for me to understand tasks-- leaving me as if I am an idiot. My relatives call me "useless" or "idiot" and sometimes considered by them as gay because of my characteristics.
Just last week, I asked myself "Why I am like this all the time?" Been asking myself ever since what is my purpose in life. Thank God He showed me my purpose. But the fact that I am like this always makes me doubt myself, "Am I normal?" So, I decided to find it out myself through the web.
I search for "What causes a person to failure doing task?" and things like that. I ended up being on a website about Autism. I was shocked to find out that the characteristic of Autistic people shows symptoms that me myself do have!
When I was a kid, I was asked by my Uncle to cook fish balls and I was afraid. I don't know what to do. I turned the fire on the gas stove even stronger that made the fish balls overcooked! I also experienced being alone because I feel like I don't belong to other boys. I learned to count one to one hundred when I was on my 3rd grade! I don't have an idea how to used a glue and shaken it with my hands until it spits on my face! When I was 16 years old, I was ask to buy gas but instead buying it-- I have buy gasoline! I also remembered myself doing certain embarrassing mannerisms that even me considered it as an "abnormal thing".
I was relieved to read your post. I found out that I was not alone. There are other people suffering the same disabilities we have right now.
Have a look at Gut and Psychology Syndrome (GAPS) - theres a great book written by Dr. Natasha Campbell-McBride. It may help you and your family - best of luck.
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