Question from a mom of autistic kid

Post Reply New Topic

This question is to teenagers/adults with aspergers/high functioning autism.

I have a 2.5 year old son diagnosed with autism. The fact that he was reading at 18 months but behind in his speech , my neurologist strongly believes he could be on the spectrum. Some of the things my son does also makes me believe he is on the spectrum. He learns things differently. He memorizes scripts, uses phrases based on remembering which phrase was said in what context. Not that I sat and taught him what phrase to use in what context.

If you had a chance to rewind your life, what do you wish was done differently to you by your parents? May be more therapy or may be put you among more kids so you figure out watching other kids? How did you learn these life skills?

I was told school will be very hard starting 3rd grade once you are asked to comprehend what you read. I read articles or comments put across by each of you and your english is amazing. Even I cannot put words to all my feelings that way. How did you learn them? Is reading comprehension really that difficult?

Can you help understand your perspective of your childhood and what it meant to you? How can we as parents help you?

I'm 47, when I was a kid there was no such thing as an AS diagnosis. However, I had bad allergies and was a sickly kid and my mother was extremely overprotective due to some mental illness of her own. I was treated like a regular kid in some aspects, ie; getting spanked for throwing fits (meltdowns), getting fussed at or punished for annoying behavior in public (stims or inappropriate constant questions) etc. At the time of course I wasn't glad of that, but the fact that every time I did something like that I got a punishment or a fussing at did help me learn to control where and when I did some things. I was also kept away from extracirricular activities, parties that the whole class was invited to, school events etc because of my mothers nutcase ideas of germs in the air that might kill me, so I only had social interaction at school, which was mainly either being bullied or being ignored, and when I was bullied my mother would call the parents of the other kid or the teachers etc, which just made it worse.

I would say, looking back, that I wish I was allowed to do more and not been treated as if I were so fragile. If my teenage rebellion hadn't consisted of just doing what other kids did whether my mother had a nervous breakdown about it or not, I'd probably be single, still living with her, and I'd be quite a bit like Adrian in the first Rocky movie. I wish I'd been pushed more, made to finish what I started, made to learn to deal with things that bothered me and made to do things I didn't want to do. I didn't learn those things until my late teens and to this day I still have trouble with them somewhat. If it's ingrained in childhood, it's a habit thats there for life I believe.

Of course you should tailor your approach to your childs functioning level and at his age now, there's no way to know what that's going to be. I'd suggest that you treat him like a regular kid as much as possible and remember that sometimes for kids to learn things and be able to do things, they have to go through some amount of frustration. Also, they aren't going to like everything you make them do. Prepare him for the world, not for living with you for the rest of his life where you can look after every physical and emotional need, the way my mother did me. I had to prepare myself for the world, and not everyone has the personality that will make them that headstrong.

I don't have problems with reading comprehension, if the tests are to be trusted I'm above average in that regard. Not all autistic people are hyperlexic, some are even dyslexic. Regarding your son I cannot speak for him as I am not him.

Reading comprehension was not a problem for me in grade school. I was an early reader, late talker, and non-communicator, but the reading of teaching materials and the understanding of concepts from reading was not a problem for me.

The problem for me was learning from being taught by people. I did not learn well from being taught by people through spoken language. I had a special education plan that allowed me to learn almost exclusively from reading and looking instead of listening and hearing. I have trouble understanding concepts from speech, but understanding concepts from written language and pictures was good, while generating spoken and written language were both bad.

The best thing that parents and teachers can do is to identify how the particular child, like your son, learns concepts in school. If he learns through pictures and written language but not speech, then let him do so. Do not force him to learn through speech. If you do, then he will not learn the skills and concepts taught to him the wrong way for him. If he learns through speech but not reading, then let him do that. It may be cumbersome for parents and teachers to adapt to his learning style, but he needs others to adapt to him when he is young. As he grows older, more of the adaptation burden can be offloaded to him, but when he is young, e.g. grade school, others are the ones who need to adapt to him. Otherwise, he will not learn well, and the basic foundations will not be there for him to become more adaptive as he grows up.

Aspergers can affect different people in entirely different ways, but just try to be understanding of your kid, and how small things can really work him up. It would have really helped if my parents were at least conscious of it.

Speaking, for me, was never a problem. I started speaking before I could sit up. Must have been when I was a few months old. My first word was 'kaascroissant', which is a Dutch word meaning 'croissant with cheese'. I was in a bakery, so it was appropriate. Somehow, I also taught myself to read properly before going to school.

As for general advice, please try not to be too lenient or overly helpful a bit later on. That's where it went wrong for me. People started treating me like I needed their help 24/7, and as I grew into a lazy teenager, I accepted that, and where I used to be seen as a genius, I'm now seen as a sub-average and notoriously lazy student. If my parents died now, I'd be over as well. If I could raise a child, I'd teach it to be self-reliant, because parents generally aren't around forever.

I didn't have any difficulty with reading comprehension. I excelled in that area.

Most children with AS are not going to pick up social skills by being put in social situations. That is how NT children learn better social skills. Children with AS need to be walked through social situations. They need to be taught social skills explicitly, and it helps to have parents help them engage with other children. if the child does not do this on their own.

Individuals with AS may eventually come by certain social skills, but that's usually later in life when they have already missed many social opportunities and potential friendships.

Here's what I wish my parents had done:

1. Don't be too proud to have your child diagnosed. My parents suspected that there was something "off" with me but never got me tested. They meant well, but it's caused a plethora of problems for me (I don't have the heart to tell them that they screwed up big time in not getting me diagnosed)

2. Don't think your child is stupid, even if the diagnosis comes back with words like "brain damage" and "deficiency". Chances are, he's actually more intelligent than the average person. Nothing is worse than being an intelligent person thought to be stupid-it's the main reason why I'm depressed now.

3. Do be understanding about grades. Your child may struggle in some topics. He's not lazy; he just finds some topics difficult. If you don't treat him like he's stupid, then he may be open to being helped. The reason why I resist being helped by my family with troublesome topics is because my parents think I'm stupid, and so I am too insecure to admit any intellectual weakness before them. A main reason I'm depressed is because of my grades and how they've been received at home as well.

4. Never tease your child about his struggles. My family did, and they didn't mean it to be nasty, but it's caused me a lot of problems.

Ok, that about sums it up

I'm really, really happy with most of what my mom did for me, especially pushing me out of my comfort zone.

That being said, I wish so much that she had homeschooled me at least through middle school (I was discriminated against a lot in elementary school and middle school) so that she could nurture my intellegence rather than me having to go through all that crap I went through. I did skip seventh grade, but my mom says that I could have been one of those young kids in college. I wish very much that I had, in spite of the social development I would have lost. I believe that I could have developed socially outside of school. I guess everything happens for a reason, but next time I'm born as an intellegent autistic kid I want that to happen.

I say this part especially because from your small description of your child, I think your kid may be headed down that path as well.

I also wish that my mom didn't get mad whenever I suggested that I'm not female. (I'm not!)

In addition to my mom pushing me out of my comfort zone, I like that she worked hard to become friends with my friends' parents so she could set up playdates with them and cement my friendships. I also like that she allowed me to choose my own religion, because I am very happy with it, although that's probably more applicable to all kids, rather than just autistic ones. I like that she got me into early intervention, and that she got me tested early so I could be diagnosed early (it seems like you're doing that part already).

I like that she fought hard for me at my schools and made sure I could get an IEP in all of them except my elementary school, where I was discriminated against because the parents of a kid who didn't like me were good friends with the school social worker. ( ) I also like very much that she stayed friends with my dad even though they divorced, and that she chose an awesome stepdad for me (I like that my dad chose an awesome stepmom for me, too!). I like that she doesn't care if I'm gay or straight or bisexual (in her words: "Your being gay is the least of my worries!") because if she did it would be another burden on top of my autism that would distance me from her and the world.

I hope this helped!

I learnt social skills when I was about 23 and only when I was told what was the right way to do things.

I had poor reading comprehension up to my teen years. My mother actually had to tell me how poor it was so I realised. I used to practice my comprehension by summing up what movies were like for people. Actually I was about 19 around this time.

If I could rewind my life...I'd be diagnosed with autism and ADHD-Inattentive as young as five. I'd have my mum yell at my siblings more for making fun of me and maybe if she pushed me a little bit more though my disorder of PDA means I'm an avoidant person and will go out of my way to get out of doing things, so I don't know if that would help.
What I really wish is that I had people there to tell me the importance of school and friends and about experiencing more of the world. I barely spoke so people were always there to do things for me so I never went out to experience the world on my own. I couldn't even order my own food at a restaurant. I didn't know that school was important for getting a job after you leave. I never put the two together. I never thought about making friends of my own.

So, I'd change the above.

I wish that they didn't chastise me for talking about my special interests and I wish that they would have given me 10-15 minutes out of the day to talk to them about my special interests, if I worked really hard to talk about a variety of things for the rest of the time. I also wish that my mum didn't get on my case about the way that I wore my hair, which is pretty much the way that I wear it today, just because I was *cough* a girl and she wanted me to look like a girl, when I didn't.

Thank you for asking, doing so means that you are off to a good start and apologies for the long post.

Just to contradict something said by OliveOil (sorry Olive)

My experience was the opposite of Olive's.

I was a very intelligent child, but also quite a handful. My parents convinced that I was just 'being difficult' pulled out all the stops to correct my behaviour and turn me into the model citizen capable of achieving anything. Inevitably this lead to large amounts of unsuccessful 'correction' which would probably be more accurately labelled 'child abuse' these days. Hitting, slapping, throttling, 50 lashes of the belt, rubbing my face in s**t, screaming, shouting, constant use of derogatory terms, constant threats of violence etc etc

The result doesn't appear to have been very successful. I'm 34 still live with my mother am incapable of doing things like regularly brushing my teeth, or washing my clothes or paying bills or engage in small talk...

I do however have lots of lovely memories from my childhood, like not informing my parents after being sexually assaulted because I was scared of being punished or pissing myself age 10 in the middle of a museum because I had asked my father twice to take me to the toilet and being too scared to ask a third time.



What advice would I offer?

Understand that autism is a spectrum and not all autistics are alike, people can be severely effected in one area and hardly effected at all in another.

Understand that your perception of reality comes from the way your brain processes information, your perception of reality isn't really reality, just your perception of it. Because the overwhelming majority of people have brains just like yours and process information the same way, a general consensus on what reality 'is' gets formed but that still doesn't make it reality. Your son's brain will process some information differently to most people and he will perceive a different reality.

You are probably confused by that so let me give you some examples.

If you put a t-shirt on your son and he starts screaming trying to tear it off you need to try and establish if he is just being a naughty child or if he is screaming because the weave of the fabric feels the same as someone running a cheese grater all over his body.

For me touching cotton wool feels exactly the same as touching live mains electricity, yes I've done both many times, yes I'm being serious and no I'm not exaggerating, the sensation is identical but to you the two sensations are very different. Would you tell your NT child off for screaming everytime you wired him up to the mains?

All children need discipline and boundaries but the best boundaries are like an electric fence, an effective deterrent most of the time but it is not going to stop a distressed bull from stampeding right over it. If you are having real trouble establishing a boundary for some behaviour with your son instead of immediately forcing obedience through increasingly extreme methods try to understand what is causing your son to behave that way and consider if it is possible to adapt to that behaviour or modify the routine/environment to avoid that behaviour occurring in the first place.


Finally I would encourage not punish obsessive behaviour. Your son's ability to hyperfocus on a topic or activity way passed a normal level of obsession is probably his greatest asset when he goes to study at university or tries to get a job, don't drag him off and force him to socialise with friends to make yourself feel that he is normal instead of letting him spend yet more time obsessing over astronomy...

i wish my parents had stood up for me when i was being bullied. i would have probably been able to get A's if i didn't have the stress of being constantly harassed by the rest of the class. sometimes i wish i had been home schooled during middle school, because that is a tough age. many of the problems i have are with my self image because everybody treats me like dirt and ignores me. i wish i had social skills training in middle school because thats when kids start to mature and ridicule each other for social mistakes. i wish that my parents didn't blame me for their divorce and stuff. i have a lot of my own problems and it just hurts more when people blame me for their problems and it eventually makes those my problems too.

I was diagnosed at a young age, somewhere around 6 years old if I remember right. I picked up all the social skills I have by being in public school, where there were a bunch of other kids. A friend of mine, from back then, had a similar severity of impairment as me; difference was, he was taken out of public school, and I wasn't. He ended up not improving much. I used to see him around the university a lot, he would barely even say "hi" when I said hi to him, although he did always look at me for a moment and wave a little.

I just suggest you put your kid in public school, or at least a school with a decent amount of other children in it. I would suggest not putting him in a "special" school or some sort of school for people with autism, though.

Be understanding.

Try to see the world as your child does.

It will not be easy.

That will likely be one of your greatest challenges, simply to understand them.

But if you can, and you do, your child's life will be much richer.

I would not say that. First, the overwhelming majority of people do not think the same way. Second, you are talking to the mother of a at the very least hyperlexic child, chances are she does not think like the plurality.