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

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Mort
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19 Jan 2015, 4:11 pm

ScottieKarate wrote:
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!


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.


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B19
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19 Jan 2015, 4:24 pm

One thing that most parents seem to have a big difficulty with, whether they are parenting typical or atypical children, is simply apologising when they are wrong! (I plead guilty to doing this in the past too.. with my now vast wrinkles (!) I can see how healing it could have been, for both children and parent).

Parents do seem to find it very hard to ask the healing question: "I'm sorry, I was wrong about that, can you forgive me?" Rather they just move on in silence typically, pretending that the error never happened. And if the parent has a neurotic need to "always be right", the kids not only learn it but tend to magnify it in their own personalities and behaviour, and it's a very unattractive trait that can negatively affect life relationships, work, the ability to form friendships. So if you can model the ability to say "oops, was wrong there, I am sorry" you are doing them a considerable service, IMO...

Sometimes it even helps to be wrong on purpose so that the kids can see you are only human after all :) They like that. I practiced it on the grandkids!



Mort
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19 Jan 2015, 4:24 pm

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


I am 42 now. I think I was 35 when I was diagnosed. Life before that was completely different. It's much better now that I know and can adapt.

I'm only now starting to build friendships that have sticking power. Part of that is starting to let go of my "mask". I think a lot of us develop a character, a pretend personality that helps us to get along with other people by mimicking social behaviors that we've observed working successfully for other people. But it's hard. It's really hard. One of the things that gets me through is trying to remember the terminated friendships by the joy they gave me while they were thriving rather than hurt feelings that came at the very end.

I've been able to have romantic relationships. But it's challenging.

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Also, how many are generally happy?


Probably a bad time of year to ask; the seasonal depression is quite bad this year. A lot of frustration gets filed away. Frustration with people not living up to my impossible expectations. Self-loathing over not living up to my own expectations. Frustration with neurotypical people for not keeping up with my pace. Frustration with neurotypical people for expecting me to keep up with theirs'. Yes, it can be quite paradoxical.

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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?


My parents didn't know that I was autistic. Their major failures were in discipline and in not keeping up with my intellectual appetites. I became quite a troublemaker out of boredom when I couldn't get access to the library often enough, or if they couldn't keep up with the material needs of my many hobbies (which were all learning experiments, really). There is a chance that your son will have an insatiable curiosity that may seem almost extraterrestrial. Try to keep him well-fed. :)


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19 Jan 2015, 6:38 pm

JPS wrote:
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.

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.



JPS made a really good point, here, with "they did not cut me too much slack". Here's the thing to remember..... A human is an adult for ALOT longer than they are a child. If you spoil a child to death----if you say: "Oh, well he's 'special'.....", you are doing him NO favors!! What's gonna happen when he grows-up, and has to go out into the world, alone? Mommy and Daddy won't always be able to be there and hold his hand. What's he gonna do, have a meltdown every time someone wants to shake hands with him, for instance? I've known ALOT of spoiled "special" kids, in person, and NOBODY likes them----yeah, they'll say, stuff like: "Aww, bless his heart", to his FACE; then, when out of earshot, be like: "Good GOD, that child's a BRAT!!", and will make excuses not to come to your house, as often. I know a woman whose son has Downs Syndrome, and people ADORE him, cuz he's not spoiled. She said she treated him just like her other children----he had to pick-up his room, just like everybody else, for instance.

Another thing that always bothers me, is when someone says "don't force eye contact". "I" say, if the child is high-functioning, you SHOULD force eye contact!! It was terribly uncomfortable / scary for me, to learn, but I'm much better-off because I did, IMO. Teach him a firm handshake / firm hug----even if he doesn't like it, at first, he'll get over it. You don't have to be "boot camp" in your approach----say, making sure he does it every single day, or you're going to "lower the boom"----but, I'm really serious about it being vital. My parent / guardian taught me these things, and I am extremely grateful, for it----like I said, at first I fought it, but then it became, pretty much, second-nature, and I had very little problem with it. When he goes to get a job, and doesn't look the interviewer in the eye, the interviewer's not gonna think: "Aww, bless his heart, he's an Aspie"! !

The other thing JPS said about self-esteem is VITAL!! Yeah, your kid's "weird"----and, he's ALWAYS going to be weird, but look how many inventions / improvements have come-about because of weird people. The thing for your son to know is that he IS going to be different than other people because he ISN'T other people, and he should be THEE BEST person HE can be----not what others want him to be, try to bully him to be, try to manipulate him to be, etc.

Also, in Mort's first post, there was a comment about being concise. This is VERY important!! We take longer to process things, than other people, and we need as FEW instructions, at-a-time, as possible----but, at-the-SAME-time, we need DETAIL----and, finding just the right balance will take, unfortunately, "trial and error". Maybe..... Instead of saying, something like: "What do you think of THAT?" (concise), say: "What do you think about the rain cancelling your game?" (concise AND detailed). You have to say something that gets our attention----we've, maybe, got about 500 things going-on in our mind, at ONE time!! If you say "What do you think of THAT?", we'll spend TONS of time trying to figure-out what "THAT", IS----and, by-that-time, the person who has asked the question, will say something like: "Hello, are you listening to me?". Just say what you mean, to-begin-with, and it'll save ALOT of frustration on BOTH of you.

Also, I LOVE B19's advice about saying when you're wrong----also, about even making a mistake, on PURPOSE!!



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19 Jan 2015, 6:47 pm

Yes, Camping Cat, setting clear limits and boundaries is really important, kids with no boundaries may like it when they are young but tend to run into problems at adolescence bigtime.



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19 Jan 2015, 7:08 pm

I don't think forcing something as complex as eye contact is possible. It's important, it needs to happen, but keep things relaxed so he can learn because it isn't about just looking, you also need to register when to look away throughout the conversation, and pay attention to hierarchies.....it's very tough to get it right, and you don't want to give him the idea he should just look at people. Staring doesn't go over well at all.



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19 Jan 2015, 7:14 pm

One thing I meant to mention before - establish what your child's dominant mode of learning is - visual, auditory, kinetic - as soon as you can. For example, one of my grandchildren was slow to learn toilet training - despite his mother's repeated explanations and attempts to guide him. The problem was solved overnight when a support person showed him a comic strip of a child following the steps to "going" - pulling down his pants, sitting on the toilet, pooh falling into the toilet, wiping his bottom, pulling up his pants, flushing the toilet, washing his hands, etc in a series of connected comic strip frames. He was a visual learner, and all the explaining by telling and describing didn't work, he didn't process information that way. Children don't always have just one dominant style, there are mixed learners, while others are profoundly single mode learners. I was primarily auditory, then visual, and not at all a kinetic learner. As I got older the auditory mode became more profound and the visual less, so there are changes over time too in some cases.



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19 Jan 2015, 10:22 pm

1. Learn to accept him for who he is, and look at what he is drawn toward. Help him learn as much as he wants about these things.
2. Be sure to stand up for him when he is picked on, teased, or otherwise mistreated by classmates (if it happens).
3. Having said 1) and 2), be sure to do your best to teach him what kind of "bending" to the needs of others is necessary to make it through life, and the difference between something he does for himself (like a hobby) or for others/out of necessity (school work, sharing things that aren't his, etc.). Much of my difficulty as a young adult has centered around trying to reconcile the fact that I'm different and special with the fact that I still need to function in the world. This leads to going back and forth between high and low self-esteem and times when I sacrifice something I shouldn't, or else don't make an adjustment that I should. The fact that many things I liked doing (e.g. math) were also part of school has made it harder for me to learn this balancing act.



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20 Jan 2015, 4:24 am

I'd put him on a diet low in sugar, high in protein, veggies, and especially probiotics & see how his symptoms respond to it.

Many people on here don't believe me, but I'm essentially living a second life after major dietary changes over the last couple years + tons of probiotics. ASD symptoms are down ~95% from what they were and I'm happier and healthier than ever. When I took a course of antibiotics in October I had a relapse of increased ASD symptoms again. Loaded up on probiotics and am back to being & feeling better.

If you'd care to discuss any of this, feel free to PM me.


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20 Jan 2015, 4:33 am

There is a demonstrated higher incidence of celiac disease amongst children and adults on the spectrum, so you do need to monitor for those symptoms, particularly if there is a history of "tummy trouble" in family members. The symptoms are often mistaken for food allergies, and though allergies are part of the picture, celiac is more complex. Chances are your child won't have these, though it is something to be mindful of.



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20 Jan 2015, 1:20 pm

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


Normal? Probably never.

What I want and need? Right now: mostly, yes. At other times: absolutely.

Don't worry about your son having a normal social life. Worry about him having meaningful, respectful, supportive, and mutually satisfying relationships with other people that amount to the type of social life he wants and needs -- whether it's normal or not.

ScottieKarate wrote:
Also, how many are generally happy? If so, where do you get your happiness from?


Lots of things....some off the top of my head: doing things I enjoy; things I enjoy that aren't activities, per se (e.g. tastes, smells, sights, textures, sounds); doing things I don't always (or ever) enjoy doing but derive a sense of accomplishment from; comfort; safety; kindness; love.


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20 Jan 2015, 2:31 pm

I would like to add that while the next several years will have many ups and downs to them, never give up.

The child you see now is not the child he will be in 5 years or 10 years.

Don't listen to anyone who tells you what your child "won't be able or can't do" They are wrong.

Our kids mature at their own rate and while he may or may not talk, read, etc when others of the same age are he can get there eventually.

God Bless


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20 Jan 2015, 3:37 pm

Dmarcotte wrote:
I would like to add that while the next several years will have many ups and downs to them, never give up.

The child you see now is not the child he will be in 5 years or 10 years.

Don't listen to anyone who tells you what your child "won't be able or can't do" They are wrong.

Our kids mature at their own rate and while he may or may not talk, read, etc when others of the same age are he can get there eventually.

God Bless


This is a great post. There are several members on this forum who will tell you that they didn't speak until they were 7-8+ years old, but now speak just fine. I have a friend in real life who fits this profile.


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ScottieKarate
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22 Jan 2015, 6:23 pm

JPS wrote:
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 :)

I did, thank you! I too wasted pretty much my entire teens and 20's to video games, and hopefully can get Samuel pointed in a different direction. I program now, maybe he'll show some interest in that. You and especially our parents have given me a lot to think about here.



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22 Jan 2015, 6:29 pm

I want to thank each of you for taking the time to reply. I have learned so much. This is exactly what I was hoping for when I posted here. You guys are too much, really.

I know the road ahead isn't going to be easy. If I had to guess, my biggest downfall is going to be excusing his behavior too much because of his Autism. Luckily, my wife will have none of it. If he acts up, he's going to be in trouble with her.

I'm going to do my best to keep him looking for the positive, but I know eventually some darker times are probably going to come for him. Now I think I'll be a little bit better equipped. Thanks again all.