What advice would you have for a parent of ASD child?

Post Reply New Topic

Hi Guys. I hope I'm not overstepping my boundaries, but I thought you all would be the best people to ask. My son just turned two and just got his ASD diagnosis (PPD-NOS as of now, but expected to change as he gets closer to 3). Of course I've got a billion questions, but I wanted to start with something much more general. What kind of advice can you guys give me as far as helping my son live a happy and productive life? TIA!

Scott

Give love, and take your child seriously.

But do you have more specific questions right now?

Don't assume your child knows how you feel about him because you provide care and attention. Express your affection and approval in very direct, literal ways. If you make a promise that you can't keep, don't gloss over it and hope he forgets - he won't. The strong sense of justice can start at an early age, and even if he says nothing he will be storing it away in his cache of grievances unless it is acknowledged! Identify his strengths and play to them. Identify his most acute challenges and brainstorm some solutions. I think you will do well - just coming here and seeking feedback is an indicator of your willingness to maximise parenthood, you want to do your best for him, and it's very likely that with increasing information, you will. Finally, read Tony Attwood's "The Complete Guide to Aspergers". It's the best guide in the view of many WP members.

- When you give him a toy, OBSERVE how he interacts with it, so you get to know his pattern of thinking.

- Understand that "stupid" and "smart" can reside, in the same brain. Don't ever say something, to the effect of: "You can do THAT----why can't you do THIS?"

Also, there is a Parents' Forum, on this site (NOT that you can't post on THIS forum----I just thought you'd like to know, if you didn't, already.):

http://www.wrongplanet.net/forums/viewforum.php?f=19

Thanks so much for taking the time! That goes for all the rest of you as well. I did browse that forum, but I've found that sometimes parents have their own ideas about what would be best for their children, but I thought it possibly more relevant to actually discuss this with those that are actually living it.

Interesting first point you made. He typically just rotates and examines toys. I'm trying as hard as I can to get to understand how his brain works, but it is going to be a process. I've been trying to choose toys that I think will hold his interest and provoke his imagination, but I typically strike out in that regard. We'll learn as we go. Thanks again for taking the time!

Well, make sure his toys are varied. Make sure he has a truck, building blocks, a teddy bear, an action figure (for instance, "Woody", from "Toy Story"), coloring book, puzzles, books, Play Doh, that little dog that walks when you pull his leash, bubbles, a ball, etc. Also, don't be afraid to give him things that you think are beyond his age----for instance, I could read, tell time, and do basic math, well before I was 5. Get him an erector set, a train, a science kit, a Chia Pet, math (and alphabet / word) flashcards..... It's probably NOT a good idea to give him anything that makes noise. Also, let HIM pick-out a toy, when you go shopping----and, don't always be thinking about "gender specific" toys. If he likes a Barbie Doll, that's okay----cuz it may not be the fact that it's feminine, that he likes about it, it may be that he likes shiny, or colorful, things, or might like the feel of the plastic, that is her skin----and then, hopefully, you could isolate that interest and get him MORE things, like that.

Also, until you find a toy that holds his interest, just pay close attention to how he does "everyday things"----like, when someone's cooking, is he always at their leg, trying to watch what they're doing? When someone's doing lawn work, does he ask a million and one questions? Does he pretend, alot----make-up stories / characters?

When you take him outside, take time to examine rocks, and bugs, and leaves, with him. When you go to a fairground, is he mesmerized by the Ferris Wheel? (It's quite common for us ASDers to like things that go round and round.) When playing with toys, does he stack them up, line them up, put all of one color, together? What type of surfaces does he like----rubber, fabric, cement, wood, etc.?

You're right, it'll be a process, and it's quite difficult with "regular" children, because they don't have the words, yet, maybe, to express what they're feeling----but, as I'm sure you already know, it's much MORE difficult with ASD children, because their brain might "skip" when they're trying to "locate" a word.

I wish you ALL the very BEST!!

Well, these are kind of general:
-accept him (including his interests, his stims, etc)
-research
-get involved in his special interests (if you can)
-know that sometimes he might not be able to things
-be respectful, especially to their sensory problems. If this tv is quiet to you, but he's complaining: it's too loud.
-be specific and straightforward

Meet him half-way.
Pay attention to what bothers him and what makes him happy.
Don't shut down his interests; encourage them.
When he is school-age, work on finding accommodations that are best for him.
Don't let people talk down to him.
When he needs it, let him have his space.
Try to communicate with him in his own way, since he will be trying to do that everyday for you.
Most important: love him for who he is, not who you want him to be.

**Also, don't support the charity autism speaks. They don't want to help autistic people, they want to talk down to them and eradicate them forever.

The "four A's" maximise the parenting of any child: attention, approval, acceptance, affection. These are the building blocks of emotional well-being. Possibly children on the spectrum need higher doses and more frequent doses, especially once the playground bullies get going...

Speaking only from my own experience when I was a (undiagnosed at the time) Aspergers level child. the biggest problem was anxiety, and hypersensitivity, my parents (religious) tried to mould me but all it achieved was pushing me inside myself and made me afraid to be myself around them (due to the hypersensitivity and anxiety), which causes distance to this day. So I think be mindful of anything like that, especially where there are conflicting expectations between family and peers, as an ASD child will find it hard to understand and navigate that. Maybe this is too specific to my own experience.

Oh, yeah----THIS is ESPECIALLY important, because ASDers have a different "interpretation mechanism", than everybody else, it seems.



Wow, that's EXTREMELY COOL!! Good post, B19!!

Thanks all, awesome stuff! I think I'll be able to be patient with him. I've been looking forward to being a parent for a long time, so I will certainly be as patient and helpful as I can be. The more I lurk around here and read other places, the things I become most worried about are depression (suicidal thoughts), and the ability to make friends. My little guy is just really into other kids, but doesn't appear to quite know how to interact properly with them.

Great advice on toys too. It's weird, he doesn't seem to be affected too much by noise. He spent New Year's Eve in the Philippines, which is basically like being in a war, and he was oblivious to the whole thing. I didn't know he had any issues with noise at all until I raised my voice and it totally set him off.

How many of you have what could be considered pretty normal social lives? Anybody?

Also, how many are generally happy? If so, where do you get your happiness from? If you're not happy, is there anything a parent could have done to change this?

It's obvious that you are highly motivated to do the best parenting job you can. That's great. Of course there will be times in the future when you beat yourself up and think that you could have, should have, done better. However that just goes with parenting territory. If your son really knows that he can trust you to be honest, kind, loving, protective, warm and safe, he will not be damaged by the things you get wrong.

I am fairly confident in saying that I probably made far more parenting mistakes than you ever will in the future, and my children (now adult) still thrived, so don't think you have to get everything right all the time from the first time - you won't!

The only other thing I would add is never define him primarily nor solely by his status on the spectrum, his individuality is not a condition, but a wonderful mix of many strands, his own kind of wholeness. Good luck!

I used to have a pretty normal social life----I attended parties of friends, with friends, went to the movies with friends, went to amusement parks with friends, talked on the phone, with friends, etc.----I lost all of my friends, unfortunately, when I revealed my diagnosis (diagnosed, as as adult). (I would suggest being careful about to whom you reveal your son's diagnosis----there's just too many, still, who don't understand it----'course, there ARE those who have had a POSITIVE experience; but, I feel the chances of it being negative, are just too great.)

I'm generally happy when I get to do what I WANT to do (i.e., my special interests), and now that I've accepted myself, and have no problem with being alone. When I have been UNhappy, I was a child, and it was because my mother put-me-down, so much----HOWEVER, I have a different outlook on that now, and I feel it may have been a case of "what doesn't kill you, makes you stronger" because I feel that my mother's actions, toughened me up. I wasn't allowed to be a victim / whiner / complainer / whatever, and I am GRATEFUL for that, now.

I am 35 years old, happily married with children, successfully self-employed in a sociable job, enjoy a good friendship circle and no longer have any discernable negative autistic traits. I believe that a great deal of this has to do with the amazing job my parents did.

They chose not to tell me about my aspergers diagnosis at first, but changed their minds when I was in secondary school because I kept telling them how everyone was saying I was weird. In hindsight I think this worked well. I had a chance to form an image of myself as normal (and they really did make me feel normal, like I was no different from my NT brother and sister), but once it became clear that there was something different about me it was better that I could start to understand why and feel validated. They also never had me believe that I couldn't ultimately overcome all my difficulties, and I'm glad they didn't because I think such an idea might have held me back.

They were tolerant and gave me extra support when I needed it, yet they did not cut me too much slack if I was out of line, and never made the slightest suggestion my condition was an excuse for bad behaviour. They did not give me a hard time about my shortcomings (e.g. being way behind my siblings with my grades), yet did not make excuses for me either, rarely even mentioning my condition.

They also focused a lot on doing things with me that would train and improve my ASD traits, such as tennis to improve coordination, yet without over-emphasising this as the reason. The theory was that improving some of my ASD symptoms would subtly improve the others. I still suspect there's some truth to this.

Most importantly they really showed me that they loved me, cared for me, respected me and believed in me. It was tough in a way to have such a solid self-esteem built up at home, but feel like the laughing stock in the outside world. For a while this created a sort of superiority complex in me as a protection mechanism. But ultimately it gave me a great foundation, with a strong self-belief and an iron will to become the person who would be treated by the world with the love and respect I deep down felt I deserved.

I also came a long way on my own, and through various therapies, hobbies, personal appiphanies etc. But the role my parents played was absolutely vital.

If there's one thing I wish they'd have done differently, it's that I wish they hadn't let me play computer games as much as they did. What a waste of that special interest energy. How those games occupied my thoughts and sucked up my brainpower, even when I wasn't playing them but couldn't stop thinking about them. Wow...

Anyway, I hope you can gleen something helpful from my ramblings. Good luck

Hi, Scott. I think the first thing that you should be applauded for is asking autistic people for advice. Too much advice about raising autistic children comes from a toxic (in my opinion) community around organizations like Autism Speaks, which all too often paint a picture of ruined lives and unspeakable desires to be rid of the burden of their own children. Or they may feed you junk science and ill-advised hope for a cure.

Your son is a real human being with feelings and likes and dislikes, just like everybody else. He may not understand intuitively your attempts to communicate with him if you're not brief, efficient, and precise in your intent. Likewise, he may be frustrated in your inability to understand what's on his mind. I don't know if he's verbal or not, but he may struggle to verbalize everything that's going on in his head. Or he may give you way too much to parse through. It's a spectrum, and it exhibits differently for everyone.

Watch every video and read every book you can find by the Patron Saint of Autism, Dr. Temple Grandin. Her practical advice is pretty amazing.

Discipline is going to be a challenge. Don't force eye contact. And be aware that a meltdown is not a temper tantrum; your son is going to occasionally be the victim of adrenal system overload that he won't be able to handle. Learn the "tells" when this is coming, and help him gently to get to a still, quiet place where he can cool down without feeling like he did something wrong. If you get into an arms race with him when he's going into a meltdown, it is likely to only escalate an already bad situation.

He loves you. He's still a kid in there. But his world is probably overwhelming his senses all the time. He may not express affection like other kids, he may not even like hugs. You'll have to find out together how to reenforce your bond in a way that feels safe to him.