i wish my parents had...

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Hi,

My son was recently diagnosed with ASD. He is nine years old. I am trying to learn as much as I can about ASD. I want to make sure that I am doing everything that I can to help him out.

So, I'm curious to know, what do you wish your parents had done for you? And what do you wish they knew about ASD?

I wish they (my mum) had known about my sensory issues and didn't insist on taking me to movies, festivals, parades, amusement parks , concerts ect. She and my grandma wanted me to have many experiences but I hated them because of the crowds and the noise and always threw a tantrum or tried to run away. It never ended well. Once I had a couple experiences with crowds I wish she had said okay when I said I didn't want to go to these kind of events. Also, I wish I had some earplugs for school and had gotten permission to stay inside at recess (again because of sensory issues). Also I wish I had a note to get out of P.E. because with sensory issues, lack of coordination and not caring about learning the rules of the games I didn't get a thing out of gym class except a massive headache and more bullying. Another thing I'd suggest is to ask your child and his teachers if other kids tease him and what he wants for lunch. I never thought to talk to my mum about these things. Other kids did horrible things to me and I never thought to tell anyone -I just never had the thought that someone else could help if I told them. Also, I threw out my lunch everyday from kindergarten to grade 8 because I couldn't stand the smell and the slimy texture of lunch meats (like sliced turkey, corned beef ect-cold cuts). I never told my mum I did this or even asked her to give me something else for lunch- the thought never occurred to me. Some autistic kids don;t have the theory of mind to understand that certain people can help them with certain things if they tell those people about them. I developed much better TOM as I got older but it was really delayed.

Very good question.

That said, what is helpful for your son may not be the same as what is helpful to other people in hindsight. The effect of autism genotypes and phenotypes are heavily influenced by environmental factors (I'm talking about family situation here, not pollution). Also, it probably depends a LOT on how severe the symptoms are for him, and what his perception and cognitive differences are.

For me, here is my retroactive wishlist (as a non-diagnosed kid before the DSM-IV recognized Aspergers)

0) Understand that autism spectrum is a difference in perception and cognitive style, not a defect. The differences can have detrimental effects if you do not understand, and the reactions of others in the family and outside can exacerbate them.

1) Turn down the TV. If your geeky non-social kid keeps asking you to turn it down, there might be a reason.

2) Quit drinking. If your kid is trying to learn how to predict people's behaviour and emotional state, making yourself unpredictable does not help.

3) Introduce your kid to successful spectrum folks - I lived in a small town when the issue came up and my (categorical/black-and-white thinking) parents and I were shown a couple of nonverbal very poorly adapted kids with serious comorbids -- clearly this was not me.

4) Get a digital talking clock for blind people - they do not tick and are not lit up, the LCD is subtle and never flashes (much nicer than an LED or mechanical clock).

5) Get an eye exam regularly - I might have learned facial expressions (logically, not instinctively) if I could see them before I was 11. Now it takes several months after meeting each person before I know what their expressions mean (and it only applies to that person).

6) Channel his special interests into something that can become a career. If he has several, channel a couple career-wise and others hobby-wise. (this one my Father did and now I have a decent career)

7) Put soft wall hangings like tapestries or quilts on your walls, they reduce the echo.

8) Get rid of scented air fresheners, cologne, perfume, fabric softener, etc.

9) Help your son learn to do homework and paperwork (sorry, I don't know how to do this but I do know berating him - or making him do situps/pushups etc for not doing it won't work - that just ends up being different stimming).

10) I don't know if there is a special school for kids who need less sensory input but can otherwise focus really well, but if there is (and especially one where they are treated as different, not ret*d), that would have helped me.

11) Try to find parents of other kids on the spectrum, find out how bad the bullying is in their school, then consider moving to the school with the least bullying.

12) Watch the Autism Talk video on how to deal with bullying with him. (Ignoring it does not make bullying stop).

13) ditto on daydreamer84's comment about lunch. I can smell things that are even the tinyest bit off ... roast beef sandwiches without refrigeration get thrown out.

Probably the most important thing that I wish my parents had done for me would have been to home school me and keep me out of that horrorible torture chamber called public school. Public school equates with poor education and a frightful social environment. Unfortunately, home school was not readily available in those days, so I was condemned to 12 years of hell in public school. Other than that, I now realize that I really needed the mentorship of several adults, other than my immediate family. In my childhood I always had a preference for the company of adults, as opposed to those of my own age.

I wish my parents would have encouraged me to go into a career where dealing with people well was not essential to success.

Explain ASD to him and that he has it but should still try his best, my parents didn't, I wish they had. Actually I had to prompt them to get me diagnosed, but that's another story. Also what nopenope said. See if you can get him a weighted blanket as well.

I wish my parents had taken me to a psychologist when I was a child. I had obvious AS traits back then and neither of them did a damn thing about it. I finally saw a psychologist when I was 20 and those traits weren't as obvious hence my NLD diagnosis.

To basicly add to daydreamers comments on bullying, prior to even grade 1 I needed someone to explain in detail as you would learn any school subject(perhaps even with books, charts etc.) what makes a friend a friend, and what makes a bully a bully, what bullying beheaviours are and how to deal with it yourself. I actually thought the bullys were my friends on the basis they actually interacted with me without being prompted and they had me condishioned to not deal with their actions at all.

I wish my parents had acknowledged they had a "different" child and done something to ease her life rather than take advantage of her condition to make her the scapegoat of the family and have someone to blame and abuse.

As part of that, I wish my parents had, as mentioned above, geared me to a career or trade where social skills weren't crucial.

I wish they'd taught me to live a successful life aspie-style and not as a 2nd class NT.

I wish my mother would have told me that I had autism / ASD, and hadn't forced me through mainstream education. Instead, she didn't want to face the "embarrassment" of admitting to anyone that she had a special needs child.

I wish my parents been honest when I asked them questions about social interaction, dating and such. It would have saved me a lot of time if I had actual honest answers instead of cliches.

My advice would just be to listen. Don't push him to open up too much but think about what he tells you if he's feeling down or overwhelmed. Take an interest in his hobbies/obsessions, no matter how often they change. Be aware of his sensory problems, and be aware that if he is in a bad mood then it might be due to being overwhelmed by sounds / patterns / crowds, etc. Don't force him to socialise, my parents make the mistake of assuming everyone wants and needs to socialise and that by staying in I am somehow hindering myself, which isn't the case. Love him, respect his differences and support him in school / with other people. Good luck.

Umm. I don't often reply but I do read here a lot.

My parents were aware of my ASD and they did everything they could to try make me 'normal'. They never mentioned any such thing to me and it was only after a discussion with some other family members when I was 24 that I was actually told. At first I was really angry because I felt like understanding ASD would have really really helped me understanding myself and possibly could have helped me avoid 14 years of self-injury.

Recently, someone suggested that they might have been trying to protect me from the label, and other people's attitudes and actions around that. It also made sure that I could never use it as an excuse and I know that what I wanted was to be shut away in my room. Only recently have I started talkng to my family again.

I don't really know the answer and whether what they did ultimately helped or made things worse. i would simply suggest that you try and understand ASD so that you can look out for symptoms and give him a way out if things start to cause distress.

I dont know if this was helpful or not. I wish you and your son all the best.

*goes back to hiding*