So many questions...It's all new

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My eight year old son is in the midst of testing, and the psychologist is fairly certain the outcome will be Asperger's - ASD. I have taken some time over the last year to recognize that his quirks are not all separate difficulties but instead, under one umbrella of a problem. So although I'm sort of relieved to be at a point where we can take some action and get some therapy started, I'm very shocked still. He's very verbal and never had trouble communicating. Our teachers and pediatrician even specifically said over the years, he could not possibly have autism. I know Asperger's is more complex...
My son is relieved too. He has told me over the last couple of months, he just wants to know what is wrong with him He has crisis meltdowns when things change and he can't cope with the outcome. He hates it and wants to be more flexible.
At any rate, there is a lot of unknown ahead of us. I don't even know where to start!
Looking forward to browsing here and learning.
Thanks for reading-

Welcome!

I also have an 8-year AS son.

Do you have any specific questions?

They are sort of my son specific but here is what is floating around in my head.

Will OT help him to stop putting things in his mouth?
Will it help him to eat with his fork better and not so much with his hands?
Will he start to learn how to adapt to life's curveballs or will he always be rigid?
Will I need to tell everyone in his life going forward, he has autism, or does it not matter?
Will he end up on medication like our first therapist insisted he needed?
Will his early signs of OCD end up evolving into more full blown illness or will they stay under control?
Will he continue to succeed socially or will he gradually lose his place with the friends he's had since he was young?
What caused this? Why him? Why is his brother so different?
How will my parents and in laws react, knowing how they feel about this type of thing?

So as I say, mostly unanswerable questions. But it's good to get them off my mind!

Obviously, no one can predict the future, but here are my guesses based on my current understandings.

Will OT help him to stop putting things in his mouth?

It's possible. It's probably your best bet.

Will it help him to eat with his fork better and not so much with his hands?

Maybe. But it's probably more than just a sensory-related issue (for instance, a habit).

Will he start to learn how to adapt to life's curveballs or will he always be rigid?

He can learn how to be more flexible, but it's unrealistic to think that this would go away completely. Help him through curveballs, but also improve coping mechanisms for when it can't be shrugged off.

Will I need to tell everyone in his life going forward, he has autism, or does it not matter?

You'll want to tell his teachers. Other than that, I would go on a "need to know" basis. Sometimes it will help you be able to provide for his needs, in those cases, it will be useful to tell. Other times, it just isn't all that important.

Will he end up on medication like our first therapist insisted he needed?

Needed for what? There are no medications that specifically treat Aspergers. Many people with AS do suffer from anxiety issues, however, and those medications can be helpful when needed.

Will his early signs of OCD end up evolving into more full blown illness or will they stay under control?

Can't predict the future, of course. But, I'd guess what you are seeing is related to Aspergers and not a separate condition. For a lot of us, these things gradually lessen with time, but many obsessive tendencies linger through life.

Will he continue to succeed socially or will he gradually lose his place with the friends he's had since he was young?

I don't know. No one can know. But, you can help by setting up play dates and helping him keep in contact.

What caused this? Why him?

We don't know the cause of AS. But, please don't fear so much. It isn't that scary. He's the same kid he was before you started getting him assessed. Learn to see the interesting things about him. (It hurts many of us adults here when parents struggle to cope with diagnosis, because it gives us the opinion that these parents wish they had completely different children and don't value the ones they actually have.)

Why is his brother so different?

Every kid is different. I'm sure you know this, just need to remember.

How will my parents and in laws react, knowing how they feel about this type of thing?

I don't know them, but his diagnosis and care don't hinge on their approval.




It will be okay.

I also have an 8 year old recently diagnosed. We were fairly certain he was on the spectrum, but it took me awhile to go through with the diagnosis (mostly because I had trouble finding someone with diagnostic power who took our insurance). We also had some telling us he was too verbal to be on the spectrum (while others believed he was). The reason I suspected was mostly because I know kids who are on the spectrum who are verbal and somewhat like my son. A lot of people don't understand that Autism can present in all sorts of ways. My son has a really advanced vocabulary and talks a LOT. But, it is the way he uses speech that is different. He does not do back and forth conversations too well (tends to speak at people), he often misinterprets others meanings and he does not know how to respond a lot of the time.

I think if your child made it to age 8 with a group of friends, then he is not in danger of suddenly losing them. My son has had a really hard time sustaining friendships thus far.

You are not required to share his diagnosis with anybody, but it's a good idea to let the school and his doctor know. I told some people. I will say, I believe that a person I told then told the mother of a kid my son had been very friendly with. This mom and I had been swapping play dates. Now, suddenly, she avoids us. I had heard her express judgement about another kid we both know on the spectrum, so I'm not surprised. I think she thinks her kid will get "autistic habits" or something, or his social life will be doomed if he hangs out with kids on the spectrum. Although I find this hurtful, my son and I don't need people like this in our lives. I just feel bad for her son. In other ways, sharing my son's diagnosis has been helpful. Many people in the school, for instance, have been more patient and supportive with him. I have had less judgement myself, as people don't view my son's meltdowns as a parenting issue now.

I think getting your son diagnosed will be beneficial, as now you will understand him better and can help him in the right ways. I think you will discover that there are many wonderful gifts that come with ASD. My son views the world in such a unique way, and has the best sense of humor. He also has such a great way of expressing things. His meltdowns and social problems are really hard for him now but, now that we have his diagnosis, we can get the support that will best help him.

ETA: My son also has OCD symptoms, and a lot of anxiety. Anxiety and ASD tend to go hand in hand. I think that my son will always struggle with some anxiety but, now that we are learning how to support him better, his anxiety will be greatly reduced once we help him cope better with social and sensory support. OT (if you have a good one) can help kids with their sensory needs in all sorts of ways.

Just wanted to jump in and say welcome! I don't have much time, but I do want to address something.

My son was diagnosed (NLD--his neurologist believes it's on the spectrum--ADHD, and SPD) at around the same age. He is very verbal. Very. Verbal. Was speaking like a 5 year old by the time he was 3. However, he does have communication difficulties, they are just not as easy to see. I would have your son's pragmatic language tested. My son has significant pragmatic language difficulties, so even though he is verbal, and has a decent vocabulary, and appears on the surface to have no deficits, he does. And as you get older, pragmatic deficits become more pronounced and lead to more difficulties, so the earlier you can get your son speech therapy to work on pragmatics, the better, if he does happen to show pragmatic deficits.

Also, when my daughter was younger (she was diagnosed at 2), I found it necessary to tell many people about her diagnosis, just so they would properly interpret her behavior. 7 years later, I almost never tell anyone because there is no need to, and at 13, my son decides who he wants to tell and who he doesn't. So, as far as your question about having to tell people from here on out, my suspicion is probably not. Especially if your son is relieved to have the diagnosis. I think that likely means he will be open to learning compensatory strategies, so with the right supports in place, the two of you may not find it necessary to tell everyone...just the people who need to understand (teachers, healthcare practitioners, parents of friends who may need to know, etc), and eventually he may decide he doesn't need to tell anyone.

Welcome!

Wow really thoughtful replies. Thank you all so much!
I think the whole "telling people" concern is that a lot of his behaviors are somewhat normal/ok for a younger child, but as he is getting older, it's more obvious that he is not quite right somehow. I'm not sure how to describe it. The sudden melt downs and the sensory problems. For example today we were in a building that had a fire alarm go off and it was awful for him. He had his hands clapped over his ears and was shaking his head in a dramatic NO shake while it was going off. I would not expect most 8 year olds to react this way, and I felt somehow compelled to explain to the lady near us, that he is very sensitive to the sound.
His verbal skills are excellent and they always have been. It's as he gets older that the difficulties are showing more. So he doesn't understand dry humor, he doesn't understand vague suggestions, or blanket statements. It has to be concrete. If I try to even use a saying like "I have eyes in the back of my head" he doesn't get it, he will say I'm lying. But at the same time, he is a voracious reader, on a 5th grade level.
The medication was going to be for the rigidity. The therapist felt it would help with reducing melt downs.
I'm not that scared- I know he is a great kid, perfect as he is! He is just frequently very, very unhappy. He gets an overload of sensory input or something upsets him and it's over- he is completely incapable of getting control. It's hours of stress and anger and melt down for him. He hates it and it's stress on the whole house. So for his long term benefit, I want him to grow and adapt to life better.

These are excellent examples of pragmatic issues. Sometimes I feel these issues can be more debilitating than limited speech (no offense to parents of kids with limited speech). The reason I say this is that people don't often recognize that there is an issue because the kid is verbal, so they think the kid is being a smart a$$, playing games, or being intentionally disrespectful.

Maybe, maybe not. It can at least suggest more appropriate things to put in his mouth!



Eventually. Time will help too. ASD motor skills take longer to develop. I'm 37 and still eat a lot of things (not soup or cereal, thankfully) with my fingers at home. You might try forks and spoons made for older toddlers. Being soft and small and curvy helps.



To an extent he will. To what extent?? Dunno. My dad was so flexible he let people walk all over him. My grandfather died utterly rigid. Me? I have to guard against both extremes. I think a lot of it depends on what parents model. Try not to get bent out of shape over all those meltdowns. They're loud and embarrassing-- and par for the course. One of the best things my folks did for me was let the meltdowns happen and continue to model, and explicitly explain, flexibility. It took forever, but it did catch on. This is an endurance race.



Need to know basis. If he has an IEP or similar, teachers need to know. Therapists and docs need to know. As for friends' parents and relatives??? My experience is that people are either going to be understanding and supportive or not, regardless of labeling.



Maybe, maybe not. There are currently no medications to treat the core symptoms of ASD. If a drug helps with some of the more bothersome things without causing bothersome side effects, you won't mind. I'd be leery of anyone, especially a therapist, insisting on medication. I have horror stories.



Don't know. I would say that depends on therapy, and how he's taught to manage anxiety. My grandpa was taught to let fear dictate his life; he had terrible OCD. My dad was taught not to give a crap. No OCD. I got both worlds; I have strong OCD tendencies but as long as I don't start thinking I need to let fear make the decisions, you'd never know.



He will, in the long run, probably be OK. He most likely will fall behind his friends around middle school. It's common; no amount of therapy or medication is going to make an Aspie mature socially at anything other than an Aspie pace (although good therapy and understanding parents can take a lot of the sting out). Don't expect him to keep up-- he will eventually catch up, wiser for the experience if you manage it lovingly. Help him cultivate his own interests to get him through the bad years and don't let him turn hateful, bitter, and mean.



Dunno. That is a question for you to ponder. Maybe it's in the gene pool, maybe it's a de novo mutation. I really do believe it's a normal part of human diversity, just one that's awkward as hell right now. Try not to waste you energy on self-blame. I repeat: this is an endurance race.



Probably worse than you'd like. Hopefully better than you fear. Don't let them bully you into being harsh with the kid in ways you know are wrong. I made that mistake with my ADHD kid; it made a bigger mess than ADHD. Help them notice the good things about each other. Keep your cool, if you can. It's hard to remember, but you just have to be decent to these people. You aren't obligated to please them.

So as I say, mostly unanswerable questions. But it's good to get them off my mind![/quote]

Thanks for explaining that. I saw it in your last post and didn't quite understand the phrase pragmatic issues. It causes him a lot of stress and is often the trigger for an hour long melt down. Luckily it's one of the areas that the school was pretty good about- the principal said she would just remind all his teachers, they must watch how they talk around him. She would choose his teachers carefully for homeroom.

Buyer Beware, thank you so much for your replies. It's very, very helpful. Thinking of it as an endurance race is a good visual for me. I have to stop thinking of how to quickly make life easier for him. It's in my nature to be a fixer.

Welcome. My kids and I am a mix of ADHD/ASD. This is common. The symptoms overlap because the medical causes are in common, namely immune and sensory challenges.

If you are in learning mode,
LEARNING AND BEHAVIOR CHALLENGES DETECTIVE WORK (http://www.4mylearn.org/Model/LDDetectiveWork.html ), and
SENSORY DETECTIVE (http://www.4mylearn.org/Model/SensoryDetect.html ) can help you gain a better understanding and help you define a path forward.

It is pretty much known in the medical community that essentially all people with ASD have sensory issues. This is also fairly understood in the aware lay community. It is becoming known in the aware medical community that many/all people with ASD and ADHD have immune challenges and/or high exposures to environmental stressors, having multiple immune sensitive genes, where the general population will have one (see http://www.4mylearn.org/Model/Genes.html). Autism Speaks is not always on top of things,medically speaking. Even they acknowledge that brain inflammation is a hallmark of ASD and immuno-sensitive alleles of genes are being named in the proposed genetic tests for ASD.

If you are looking for books that describe these: Kids in the Syndrome Mix of ADHD, LD, Asperger's, Tourette's, Bipolar and More! by Martin L. Kutscher, Robert R. Wolff, Tony Attwood describes the overlapping symptoms, and Martha Herbert, a pediatric neurologist from Harvard Medical School describes the immune dysfunction in ASD in enormous detail in the Autism Revolution: Whole-Body Strategies for Making Life All It Can Be. Unfortunately, neither of these books are highly approachable.