Hi, my son is almost 5 and has an ASD diagnosis. I can agree with suevv in that the most helpful thing for me was to give up on the idea that he should be doing better and accept that he was doing his best. When I did this my stress went down. When my stress went down DS seemed to be happier and ended up doing a bit better.
I still am not confident that my son is on the spectrum. The experts who diagnosed him simply state that: ASD is the best diagnosis to explain his current difficulties. The diagnosis will get him the therapies he needs right now.
My son is terribly impulsive, rigid, oppositional, bossy, hyper, generally difficult. We started early intervention at 2 and he tested at 9 months for social development. At 2.5 we got an ASD diagnosis.
He is not like any of the other kids who have ASD in our community. He spoke early at 5 months and quickly ended up speaking in complex sentences. Testing at our ASD evaluation at 2.5 put his expressive language at over 4.5. Now at 4.5 he talks like an adult pretty much. He has a great imagination. He lags in play skills, but he can make up stories and come up with amazing ideas no problem. He does appear to have empathy, learned or natural I can't say, but he will run to help someone who needs help. He will also take out a baby who even looks like he might mess up something DS is working on.
My son gets PT and OT, 2 hours each per week. He has sensory issues and is clumsy in general. He has amazing fine motor skills though. He wants to play with the other kids. This is more recent. They don't always want to play with him though. He gets along a lot better with older kids and adults. I think this is because they are more predictable and follow rules better.
My son has been kicked out of 2 preschools and has a full time aide in his current preschool. 2.5 years of therapy, including behavioral therapy, was entirely ineffective. 4 months ago we found ourselves looking at getting kicked out of yet another school and very worried about the future.
We were desperate and our dev ped suggested Prozac. We were not yet ready to try medication. 2 months ago, we were. He had started biting again and was banging his head at school during meltdowns. My son has improved so much there are no words to describe it. Is he normal? No. But he can function now. The Prozac is to treat anxiety, he had lots of OCD symptoms and some tics on and off and was always so worked up about what awful thing might happen he never could enjoy himself. Now he is happy. Not all of the time and today was a rough day, but overall my son is happy. He no longer hits or pushes or bites or hurts himself.
Now I wonder if he really is ASD? Maybe it was anxiety? He's still super hyper. Maybe it's ADHD? Our dev ped says that anxiety and ADHD are often part of ASD and they still feel his diagnosis best captures where he is at right now. Just like any parent, I just want the best outcome for him as he grows up. It's difficult. There is nothing clear cut about any of this. DS is so amazingly advanced academically and so far behind socially I have no idea how he is ever going to manage to find his place in the world. We can only do our best to help them do their best.
I'm still in the same boat as you. Hopeful for some end to the difficulty. Waiting for my son to be old enough for IQ testing. Confused by everything. All of the other kids just run out onto a playground and start playing. Spontaneous and happy. That is what I want for my son. These days it even happens on occasion. He is just as likely to need to take a special path or to want to walk around to perimeter or to play on the bench the moms sit on rather than on the playground equipment or to use the wood chips to make math equations. If it's a playground we have been to before he is likely to go in order doing exactly what he did there the last time, which at one playground is counting all of the cutout circles in the metal platforms on the playground. How is that more fun than actually playing? It's frustrating for me. But I'm sure it is more frustrating for him.
What will we do with him when he starts school? He's not yet 5 and is academically at a 2nd grade level. And that is with minimal instruction. Basically we teach an idea and he runs with it. I taught him negative numbers and he immediately integrated it into his independent math play. He loves to read Magic Tree House and is obsessed with mazes. I now buy him adult maze books because he breezes through them so quickly. He makes mazes every time he touches a writing implement. He makes them out of everything. The other kids at preschool are learning their letters. I'm terrified of transition to K.
I guess there is no knowing where you will end up with kids like these. My son is so loving and wonderful at his good times that I just try not to think about the future any more than I have to. There are lots of books on autism and lots of books on giftedness. There isn't a lot on children who seem to combine the two. I don't know if my son is gifted yet, but I do know that his mind is amazing and entirely different from his peers. It's hard work raising children. It's really hard work raising special children. Just keep swimming.
