Thankful for this site

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Hello everyone,

I have been lurking on this site since January when my 3 year old son was diagnosed, looking for answers, and maybe a little insight into what the future may hold for my son. I have learned so much more here, than the hundreds of books, articles, blogs and websites that I've read, that I felt obligated to sign up and give my thanks to everyone that posts here.

When my son was first diagnosed, like any other parent, I panicked and felt like all the dreams I had for my son were dead, and really had no idea what his condition meant, or what to expect. Our concern began when he was 2, he seemed to regress in his speech, from using words such as "alligator", "golf cart", even simple sentences, such as "I jump", "I go" to not using any words regularly, and withdrawing, hand flapping, and not making eye contact.

We went to a well known neurologist, he gave his diagnosis of classic autism, and basically said to get him as much therapy as we could afford. He is now receiving aba therapy 3 hours a day, 5 days a week, with good results. He makes eye contact, seems interested in others, follows some commands, and really is very excited about going every day. He loves his therapists, runs to them hugs, etc..

Here's my problem/dilemma/question

I feel like these therapies are somehow beneath him. I know he can do all this stuff, I see his intelligence just looking in his eyes, and I feel that by taking him to these therapies, I am somehow not beleiving in him. I feel like I should trust him to develop things in his own time, at his own pace.

He babbles all the time, and I swear he's talking in complete sentences, in his own made up language, I recognize certain sounds/words when he's doing a certain thing, and I swear I've heard him say huge real words, but so softly under his breath that I do a double take, and of course he'll never repeat himself. I just want him to communicate his needs, to releive his frustration. I could care less about social awkwardness and fitting in or being like the other kids. He is our only child, so there is no comparing, but we are happy as a family he loves his mom and dad, hugs us all the time, we roughhouse, he loves to wrestle, jump on his trampoline, he's bright, active, beginning to take an interest in his toys, dances to music. Everything is fine - except he doesn't talk. He can be coaxed into saying words sometimes-once- he will never repeat himself. He makes every sound imaginable, at least every one needed to speak the english language, but it seems like he doesn't want to.

I would be very interested in hearing from someone who has been through this with a similar case. If I pull him out of these therapies and let him develop at his pace, am I doing him a dis-service? Am I thinking with my emotions? Should I just trust my son to work things out for himself? Or, if he doesn't get that extra push from the therapies, will he grow complacent, and not advance, I am at a loss as to what to do.

Sorry for the long post.

Dear Luke's Dad

Although my autism is different from your son's (so I will leave it to someone else to offer advice), I just want to say thank-you that you are asking adults with autism for their input! It seems so crazy to me that so many people go from therapist to therapist and from school to school, reading all the theories written by neurotypical people, and never thinking to ask someone who can communicate what it's like from the inside.

And honestly, I have never wished I was not autistic. It is not a curse to me. My brain is merely a complex construct of integrated hardware and software, fit for specialised purposes, and not entirely bug-free.

Your little boys sounds alot like my Jake at the same age. Jakes nine now and still rarely talking. It's ok to talk to the therapist and tell them that you think that luke can handle more and you feel he would grow from it. If you think that speech isn't coming along fast enough to be effective you might want to try and find other means of comucation sign works great for some kids like ours, pics are a nice jumping off point for a pre-reader and can be used down the road to teach reading and move in to type and word selection devices. It's very important to remeber that speech isn't the great indicator of intellect that it's made out to be or the key to your childs future happiness that some others like to try and make it. Also if he gets borde with therapy it's not a good thing at all it can cause out burst and anger that make progress harder. Jake got so sick of getting the same color page a few years ago he ate the crayon to avoid doing the work. <not that can blame him after finding out he had the same sheet for months>

While I tend to feel some families way overdo the therapy (that is a whole other topic), I thought the answer to your question, about therapy for your unique child, was right in your post: he enjoys going. The most important thing at his age, IMHO, is to be tuned into him as best you can and give him what makes him happy. Right now he has a routine that he is happy with. I think all thoughts of how fast he might progress, etc., are secondary. Certainly, you can ask the therapists about moving onto new skills, and certainly you can and should question the targets they set for him (I, personally, am not thrilled with working so hard on getting kids to make eye contact). But, in the end, if the situation was inappropriate for your child, he wouldn't be happy. AS kids don't fake it; they are either happy, or they are not. And happy is good

As for talking ... a friend's son was non-verbal until he was 4. In the days before ASD diagnosis' became common. No one worried about him. Why? Because the intelligence was evident, and he had his own unique way of communicating that allowed him to make sure all his needs were met. One day his dad woke up in the middle of the night to hear his son talking in his sleep ... in complete sentences. Seems he was waiting to talk until he had it perfect.

Another story I've heard is about the autistic child who didn't realize the words in his head weren't coming out of his mouth; he was confused why people didn't hear him. Obviously, that is a more complicated one to solve or figure out, but its good to be aware of the possibility.

The main thing right now is to love your child and know him. Tune into what causes him stress (the response can be delayed, its important to note) and what makes him happy. Exploring in a safe and loving environment is the main work of the toddler years, and it sounds like you've already embraced that as a family.

Welcome and hope you'll jump into the conversation more!

My cousin's husband didn't speak until he was 5- now has PHD in Mathematics. He says he was too busy counting
Just the fact that you are actively involved is beneficial. I'm often complimented by my son's doctor and school about my level of involvement which surprised me but they say that some parents can't be bothered.

thanks for the responses.

Alphabetania, that's why this site is great, it gives me an 'inside' perspective, and its also releived a lot of the worries I've had about Luke, everyone on this site is friendly, helpful, and willing to share their story with others who need the support. I don't beleive its a curse either, its brought my family together in an amazing way. I spend more time with my son, and worry less about the meaningless things in life.

CRD, it's possible that he remains non verbal, and I should prepare for that. We are starting the PECS picture system with him now, and he caught on right away, he loves the instant action it gets, instead of whining and pointing and playing a guessing game. Hopefully it will be the bridge he needs to really begin to communicate.

DW, he really does enjoy the routine of going daily. He is also way better around other kids now, he can actually tolerate small children next to him on the playground, instead of screaming or pushing them. Also the meltdowns and frustration have all but disappeared, probably due to the 1 on 1 attention both at therapy and at home.

Aimless, I have heard a few stories like that here, Luke 'reads' magazines, turns every page. I watch his eyes and he scans every single page even ones with no pictures. Field & Stream is his favorite, beleive it or not, my wife got him a subscription after he brought a copy home from a doctor's office and looked at it for 3 days.

Thanks for the support guys, it really does help.

Don't be shocked if he is realy reading those magazines. Jake is a self taught reader from about the same age luke is right now.So spelling in order to hide from him what you and your wife are talking about for will no longer work for long. We tested this by spelling lets go get a cheese burger <jake loves burgers more then any other food> and he ran to get in the car.