Everything changed, but nothing changed

Post Reply New Topic

Big big day today. We saw a pediatric neurologist and he diagnosed my son with autism. He reviewed all notes and previous info, observed and talked to my son, and he said that for 13 years the people who've said he's just a disobedient kid or that I'm a mom who doesn't know how to properly use reinforcement schedules have not understood or cared enough or whatever to see that he has autism. He said the professional world did me a huge disservice, and that I am to be commended for being a strong advocate. He said the regional center will often not diagnose kids who are higher functioning or who, in my son's case, have the form where they can use social mimicry to try to appear normal. They of course need to safeguard their funds. Same with Kaiser - if they diagnose him with autism that opens up a whole world of expensive things they will have to cover on his behalf. But it is very obvious to him that my son has autism. He is high functioning in some areas, extremely anxious, hyperlexic, able to mimic social type communication to a certain degree, but definitely autism.

I cried. Of course. Relieved, mostly. Validated. What a change to feel that. Two psychiatrists who've treated him have told me he's on the spectrum but I know it's not something a psychiatrist diagnoses typically so it wasn't the same as hearing it from the autism king of our area. Huge change. It all makes sense.

We made some plans, and then got in the car to leave. And in the car my son had a huge meltdown over wanting me to pull over so he could get out while we were on the freeway. He screamed his head off, kicked the seat in front of him, threw things, accused me of lying about there not being an exit we could take right then, lying about it being illegal and unsafe to just stop on the freeway, screamed mom mom mom answer me then when I'd reply he screamed shut up stop talking to me do not ever talk to me again, then right back into mom mom mom answer me. Etc etc.

So, yeah, everything changed but nothing changed. I do like to be right, and this isn't the first time I've been confronted with the idea that he might not ever live independently, so it wasn't really a huge shock, but so much better to know that some of the time, most of the time maybe, he's not just deliberately torturing me with screaming. It helps me try to stay helpful to him instead of angry and dismayed over why in the world would he act the way he does.

Oh my goodness... I'm sure you will have a lot of emotions, all at once or cycling through. One things an official diagnosis changes is that it validates your perception. Having someone tell you you've been right all along is a huge confidence-builder. When our dx came I read a lot of books and articles with a slightly different perspective: instead of thinking "Is this my kid?" or "This sounds exactly like my kid," I started thinking, "I wonder how I can help my kid."

I hope they will provide some services, but am glad you can start figuring out what your son needs rather than how to get the dx.
J.

I am sorry to hear about the meltdown but you are heading in the right direction.
You did not fail others failed to listen
I personally know how frustrating that is.
Its harder to diagnose some children than others
My child was also a hard to diagnose
It happened to us as well and my husband noticed before 6 months something was wrong
We got lots of assessments that changed constantly from autism, to spd to autism like, to spectrum but not autism.
I had to do a lot of my own therapy because a lot of services weren't available where we lived or we were put on waiting lists.
When we moved the services were there but waiting times were over a year.
So I worked with tandem with teachers.
At 7 we got a partial diagnoses Autism and ADHD with ADHD as the main problem, but that was switched to autism and mild intellectual disability. The special teacher and I do not believe the ID diagnoses.
So my child has an undiagnosed learning disability. No one can diagnose it so its up to me to come up with my own therapies for it. Some of them like making my child read out loud caused meltdowns at first but worked in the long run.
I really hope you find what works for you.

It sucks that you ran into some schmuck doctors before you found a good one.
If it's any consolation, it's a pretty common experience.
My son's pediatrician said he was just "immature" and referred us to a counseling center for adults (he was 7)when we asked for an ASD evaluation. His school refused to evaluate him because he was getting A's on his tests, even though he was failing his daily work. Then we moved, and his new school saw it right away and evaluated him.
My husband and I were practically giddy when DS was finally diagnosed. Not because we wanted him to have autism (obviously) but because he had always had autism, and we were no longer alone in dealing with it. A label doesn't solve all your problems (duh) but it's still a big step in the right direction. So congratulations!

Congratulations on the diagnosis! Now you can stop wondering what is going on (or what you are doing wrong, if you've had that feeling, I know I did!) and start focusing on how to work on behaviors. It's a mind-changing event, even though "nothing has changed." The diagnosis doesn't change who your child is or who you are, but gives you mental resources to make better change in behaviors. In my experience, it took the "blame" for the unusual and inappropriate behaviors away from me, and that was really helpful in making me see and respond to situations more objectively and appropriately.

It's good if it helps- congrats for "reaching the end" (of the evaluation period anyway). I felt the same way, even though we didn't wait nearly as long. At first "wow it's official" and then "wow absolutely nothing is different". Will he be eligible for new services now? The biggest shock for me was once he reached the end of the 1 year wait list for evaluation, there was a 2 year wait list for therapy. I hope that's not the case for you.

You are right, everything changed and nothing changed, but I am really happy and relieved for you, anyway, and hopeful that this will mean you can get more appropriate help.

But, really, #&*!&$! the world for letting you both down for so long.

Sorry, that needed to be said.

Ummmm.....congratulations???

I never know quite what to say.

Just feel supported by a giant invisible "spectrum" of parents who know what you are going through, who know how you feel, and who know what it's like.

You are not alone.

Keep in mind, lots and lots of people live independently with autism of all kinds, except for those who need nursing care - it just may take longer to get there, or it may look different than what you expect.



We got this one, too - WTF do they think "developmental delay" MEANS? Grrrr....

At 5, I, too, was told my son was immature, instead of getting a real diagnosis. They told me he seemed to be about 2 years behind socially. They also called his impulsiveness, intrusiveness, and hyperactivity "extreme exuberance." But other than that, he was totally typical according to them. Just immature, impulsive, intrusive, and hyperactive, with the social capabilities of a 3 year old. Oh, yes, and they also noted he should be able to button buttons, zip zippers, tie his shoes, and pedal a bike. I guess the fact that he couldn't do any of those things were significant only as a means of pointing to my utter failure as a mother.

Yep. I was told the same things about my son. They said he was about two years behind socially, even more so emotionally, had motor delays and about his speech they said he would "catch up" and it was just that he didn't feel a need to talk much because I wasn't pushing him to use his words. Later, they said (because he was evaluated by the preschool he attended) that they were concerned about his "nervous habit" of twisting his fingers all day long. They also (at his turning 5) said that they didn't think that he should still receive counseling because he did just fine one on one with the social worker and they couldn't understand why someone so smart would still be having so many issues with coping skills, then asked me if I wanted recommendations for parenting classes. They also told me that his social issues were because I was not arranging enough play dates.

I was also hard to diagnose. I had other labels before the Asperger's one.

It's good to have some validation that something really is wrong, it has a name, you're not crazy, it really is hard, and that the advice you've been given to date about reward systems was never going to work. It's tragic that you've been seeking help for over 8 years and it took this long to get identified.

Did the psychologist give you a severity level with the diagnosis -- like level 1 (requires support), 2 (requires substantial support), or 3 (requires very substantial support)? From what you've described, I'm wondering if they went with level 2...

Does the clinic you went to provide therapy? If not, did they give you any concrete recommendations? Or was it a case of "Here's your label, go ask for an IEP, have a nice day?"

I think you need to aggressively pursue getting therapy and respite care paid for by the Regional Center. You need some heavy-duty help with this.

Also, in CA your health insurance is required to provide speech and OT for a child with an autism diagnosis.

Thanks all! Amazing how similar some of the stories are.

Um, levels? I haven't really gotten into anything with the doctor who diagnosed him. He started him on Gralise for his akathisia and he's ordering a brain MRI to follow up on an MRI my son had when he was around 8 that had found a spot of brain damage. I guess after he's been on the meds for a while and after he's seen the MRI we'll get more into what to actually do. For now it was a big pat on my back and then OK get out. LOL.

The nurse did say that I can take the after visit summary to the regional center and ask for services. And I'm looking into the medical insurance.

I'm thinking some sort of speech therapy might help him - I hadn't thought about it recently since the school (the homeschool charter we were a part of) evaluated him two years ago and the speech therapist said he was amazing. But the speech things I'm thinking about that he needs would more more along the lines of:

- not blowing out our eardrums constantly
- not interrupting
- not talking nonstop for over and hour and having a freak out if we do anything other than sit and listen with rapt attention
- not screaming blah blah blah or growling noises over us when he doesn't want to hear what we're saying
- trying to explain that he's angry about something instead of lecturing us on what terrible human beings we are when he's mad. He says that when he says those things, what he really means is "mom, I'm mad that you won't let me have ice cream" or whatever, but that it's like another person takes over his mouth and forces him to say the other stuff.

Are those like pragmatic speech things? He also does the following non annoying things that might also be pragmatics:

- can't summarize or give the general idea, instead tells strings of details
- assumes a shared understanding that isn't present, say for example when reading a book he'll say "mom, Jack didn't want to go to the party, but Jill wasn't even there." Just that, out of the blue, I have no clue what he's talking about, and I'll tell him I've never read the book and have no clue but that never stops him
- Not sure what this is called but when you ask him a question he'll often say "so basically, um, yes, it was like this, well, basically, I'm not sure how to put it, but basically, um, yes, basically" for a long time before getting to any sort of point.

Does any of that sound like stuff a speech therapist would work on?

Yes, most of those sound like issues that would be addressed by a speech therapist -- a good one with a lot of experience in pragmatic speech and expressive language issues, and experience with high functioning autism. (Your charter school likely has someone who mainly focuses on pronunciation.) Someone trained in Social Thinking by Michele Garcia Winner might be a good place to start.

Be prepared that when you take the report to the Regional Center, they are going to re-evaluate with their own doctors. You may still have a battle ahead to get him accepted as a Regional Center client.