My Boy Has Been Officially Diagnosed

[Jack L Palmer]

My 8-year-old son went into his ASD screening today and he - finally - got the diagnoses my wife and I have suspected for years. He's has a ASD. He's high-functioning, but definitely has it. It's sad to me to know that he's going to have to deal with this his whole life, but I'm happy to finally have this officially diagnosed so we can, at last, start getting him the help he needs.

I'm honestly just looking for any advise from other parents out there. What do we do now?

 

[Southernscotty]

I am praying for you and your family friend. May God wrap you in His loving embrace and fill you with all peace and assurance.

 

[SkyWriting]

My 8-year-old son went into his ASD screening today and he - finally - got the diagnoses my wife and I have suspected for years. He's has a ASD. He's high-functioning, but definitely has it. It's sad to me to know that he's going to have to deal with this his whole life, but I'm happy to finally have this officially diagnosed so we can, at last, start getting him the help he needs.

I'm honestly just looking for any advise from other parents out there. What do we do now?

Each case is different. The more you work to get into his world view, the better the chance he will work to adapt to others.

 

[Paidiske]

My daughter is six, and we got her diagnosis almost three years ago now.

I'd say take a deep breath. It's going to take time to get used to what this means for your son and your family. You don't have to have everything sorted in your head straight away (and if you're like me, you'll need time to grieve, too).

If you'd like to chat, you're always welcome to PM me.

 

[Jack L Palmer]

Thank you for the thoughts and prayers.

To be honest I'm a little jealous, Paidiske. We've suspected him to have an ASD since he was about 3 and it's taken this long just to get to this step. It's hard to believe we've been fighting this fight for roughly 5 years just to get to the point where a doctor would see it. It felt like this day would never come. I can't say we're really grieving - more relieved. It is still sad, though, like I said. Officially having that label is... well...

We've pretty much already knew it, we're glad we've finally made it here. But I'm not really sure where to go from here, now. We're fortunate that we seem to have found a good psychiatrist, though, so we should have some good guidance from a clinical point of view.

You're right, SkyWriting, about getting to see things from his perception. It's difficult to do, but luckily we've already had some progress there. He tends to cling more to me than my wife, which is fine. But I have a bit of a leg-up in that arena over her.

My son is lucky in a lot of ways, too. He has a very supporting family - at least the immediate family. His mommy and daddy love and adore him so. He has a little sister (6 years) that's developing normally that sometimes acts more like a big sister sometimes. She loves to take care of him and keep an eye out for him. And he loves his little sister, too. Thick as thieves these two are. I don't know how we got so lucky there. I'm an insurance broker and I always make sure he as solid coverage for his condition so we can be on the ball about getting him into whatever he needs to get. I do a lot of work getting him to focus on the positives of things, so it'd be hypocritical if I didn't do the same thing.

 

[Paidiske]

I don't know how it works in the US, but here when we got a diagnosis we were suddenly landed with piles of information about every possible thing that might help, and one of the things that was hard work initially was working out which, if any, we were going to use. We ended up focussing mostly on speech therapy because it was her speech which was most delayed.

But I'd say take some time to learn what's out there and don't jump at every avenue offered. People tried to push us into what they thought we should do, and a lot of the time, that wasn't helpful!

 

[Sam91]

Hi

My daughter is 11 and was diagnosed a couple of months ago. She is high functioning. I knew at birth that she didn't like touch etc and had worked out by the age of two that it was probably autism. I was hoping that she might improve and escape a label. School referred her during the first year she was there. I has taken 6 years before they labelled her. They took a wait and see approach, seeing her every 6 months and giving her the test last year. (The sensory and social communication difficulties were diagnosed years ago.)

Well, the diagnosis hasn't changed anything for us. We see the nurse this month though, so maybe she'll want to check if I have gotten in touch with any of the support group yet. I haven't.

My advise though is to take your time. It is something that needs to sink in and be processed.

 

[Job3315]

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[Jack L Palmer]

I don't mean to seem rude or unappreciative, but I'm not going to believe that gluten is the cause of autism any more than I am going to believe that vaccinations are to blame. If you found a way to live a healthier life, I'm happy for that. I'm also happy that your friends and family are supportive in that manner. I'm not going to remove gluten from his diet as that'd remove a lot of wholesome foods that he could have. Gluten isn't hurting him - he has an ASD, not celiac disease.

 

[Job3315]

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[Jack L Palmer]

No, don't be sorry you mentioned it - again, I'm not wanting to sound unappreciative. I actually do appreciate any advise.

 

[Glass*Soul]

I'm not a parent but I am an autistic adult.

I wasn't diagnosed until the age of 57 and it was an immense relief to me. I see it not as a label but as an invaluable piece of information. I even made myself some "business cards" to give to friends as I explained the news.

If there was one thing I wish I could have learned much earlier in life, it would have been how to set my boundaries. It's something every child has to learn but if you are autistic your parents and teachers can, in all love and using the best information they have, push you way too hard only to be utterly aghast if you have a meltdown or experience burnout. Meltdowns and burnouts are clear signs of too much for too long as clearly as is a blister on a heel.

There can be a pretty big piece of largely unrecognized ground between what we autistics have to do to simply get along in life and what we would need to do in order to appear normal and pleasing to others. Being able to recognize that something is actually an optional activity no matter how casually others may seem to expect it of us and forego it in order to have some healing alone time if needed is an important skill. Being allowed to do so, without the added pressure of having to explain or make excuses or having any shame attached to it, is a precious gift.

For autistics, alone time is not lazy time or lost time (or as my mother used to call it "having the vapors") but a necessity and an actual self-discipline just like getting enough sleep and good hygiene. Especially if you are away from home on vacation or visiting relatives, proactively make sure there is an adequate place and time for your autistic child's alone time and that everyone knows to respect it, just as you would make sure they have the wherewithal to brush their teeth.

What instinctively feels like plenty of alone time to you is probably not enough. In this please be willing to be the student as your child learns to master the art and reports back. You sound like the kind of guy who can do this!

Good luck.

 

[Jack L Palmer]

Wow. Thank you so much for that insight, Glass*Soul. To be honest, I never really thought about how much alone time he needs. He does need a good deal of time to veg out and do his own thing, now that I'm thinking about it. I guess I just sort of figured he's a loner like his daddy. I need alone time also in order to really fully recuperate so I can at least empathize with that.

 

[ubicaritas]

I was undiagnosed until I was 33 or so. I tried doing communication therapy years ago but it was too psychologically stressful as an adult, it felt more like some kind of conversion therapy and it lead me to have depression, so I just stopped doing it. Everything felt like a sharp criticism in that therapy class.

It didn't help they made me watch episodes of Friends and tried to get me to understand sarcasm. A Jungian therapist I worked with just told me flat out "It's a good thing you don't understand sarcasm very well. Sarcasm isn't nice".

I still have trouble understanding some facial expressions and I don't have much facial expression of my own. People say I frown alot but it doesn't feel like it necessarily. I have extreme difficulty smiling socially, it doesn't feel natural at all. I basically feel like a vulcan among humans, one that often gets frustrated by a world that seems so crazy.

I do understand emotions though, to some extent, and other peoples points of view... at least I am not bad in understanding how ordinary people interact and what polite stuff looks like. I just view it as more a second language I've had to learn. People who talk to me don't immediately realize I have Asperger's necessarily.

I think studying Buddhism years ago helped me a great deal to learn to understand other peoples perspectives, especially practicing meditation. But in some ways it also made me more detached from things, and that sometimes can be unhelpful in actually living in the world (as Rick Hanson's book, Buddha's Brain points out), because you become more sensitive and don't want to put up with the crap people dish out sometimes. You feel the sting more of peoples cruelty and the madness of their ignorance. It kind of reminds me of this Dostoyevsky quote:

Pain and suffering are always inevitable for a large intelligence and a deep heart. The really great men must, I think, have great sorrow"

I've always been a sensitive person on the inside. I just never knew what to do with it, or how to communicate it.

Maybe if you are a young kid, communication therapy will be easier. I've spent a lifetime being who I am.

 

[Plokijuh]

I was diagnosed as an adult. My daughter is also very likely on the autism spectrum. It's hard, especially if people constantly focus on deficits. My advice would be to work to his strengths to work on his weaknesses . Work out what motivates him (special interests ftw!), and how he best functions and work from there often people with asds are fantastic problem solvers (when we want to be), so involve him in his own therapy directions.

 

[Dave-W]

When my oldest granddaughter was diagnosed as a high functioning ASD, her mom, my middle daughter, looked at the lists of symptoms and indicators handed her by the doctor and said to herself: that is dad. She gave me a book "Look Me in the Eye" by John Elder Robison. He is a high functioning aspie.

I would suggest it to you as well; it helped a lot in understanding both my granddaughter and myself.

 

[GodsGrace101]

My 8-year-old son went into his ASD screening today and he - finally - got the diagnoses my wife and I have suspected for years. He's has a ASD. He's high-functioning, but definitely has it. It's sad to me to know that he's going to have to deal with this his whole life, but I'm happy to finally have this officially diagnosed so we can, at last, start getting him the help he needs.

I'm honestly just looking for any advise from other parents out there. What do we do now?

Just saw this. You may not even be around anymore...

I just wanted to encourage you. You received some really good replies.

My granddaughter is on the spectrum and what I wanted to tell you is to get all the different types of therapy you can without pushing him too much. Learn his limitations so that frustration doesn't set in.

As he gets older, you'll find that he'll get better and not worse.
When they understand their problem, they seem to be better at handling things.

But if they don't really like something, for instance my granddaughter does not enjoy restaurants or places with too many people, so unless she agrees, we just don't go. It's like torture to them.

So,,,look forward to better times and God bless you and your wife and younger child because only parents with a special needs child knows what it is to take care of him.