Doctors seem dismissive???

[ashofthestars]

My son was suspected of having high functioning autism on his third birthday. My doctor thought I should get a pediatric specialist look at him but the waitlist was 3 months. While waiting for his appointment, we went through our local child development services which evaluated him and he was diagnosed with Aspergers, or high functioning autism. Since then he has gotten part time into a special preschool and gets 1 hr a week of speech therapy.

Today we had a meeting with the specialist, finally, and were so disappointed. She just seemed to keep dismissing our concerns. Like his speech wasn't that bad compared to some of her other autistic patients, how his lack of potty training could be worse, how he's so loving and social. These are all excellent advantages, don't get me wrong. But I couldn't understand why she couldn't understand that those amazing qualities don't negate the fact that most evenings end in him crying, having meltdowns, and me crying because I don't know what to do to help him. When I ask his school for help they give me someones name who can supposedly help me. When i ask the primary dr. she gives me a specialist who seems to think we've "got it good" somehow. I know we are fortunate to have so many strengths in my son. But we are hurting and he is hurting.

I guess it leaves me hopeless. If a specialist cant give us advice, answers, someone to help. then who will? Will this be the struggle the rest of our lives? Because he's high functioning, affectionate and bright, people will not see that we still struggle and need support. I feel like everyone's failing him, and mostly that I will fail him.

 

[Warmheart]

It may be that the ASD specialist was trying to reassure you, rather than deny you ongoing services to address your son's needs. When is your next meeting with the ASD specialist? I ask, because you need another meeting, where you go in not feeling anxious, but feeling charged and ready! You'll bring a list of your son's challenges that need to be supported. On your list will be those nightly meltdowns, so that this ASD specialist can get an asessment done to see which factors may be contributing to overload and overwhelm for your son, either at school or in his home environment. Print the list of your concerns out, and see that each challenge your son has will be addressed, so that you can get those appropriate supports in place.

Remember what "FAPE" stands for: Free Appropriate Public Education. This is your son's right. This means that your son will have an IEP (Individualized Education Plan) or 504 Plan, due to his diagnosis. You will have IEP meetings, where you get to have an ASD advocate right there with you, fighting for those accomodations. The more accomodations, the fewer meltdowns, shutdowns, and challenging behaviors your son will have.

Please take courage. You are just starting out, and naturally feel anxious for your son. In time, you will get an ASD specialist to see regularly, and an ASD advocate. The IEP and advocate for those IEP meetings is your right. Yes, you may have to fight for getting services, but having the specialist and advocate on your side will help. Bring your list of your son's challenges that need to be supported for your next ASD specialist meeting.

The ASD specialist should also help you be getting started with general ASD services for your son, such as OT. Speech is already in place it sounds like with a weekly session, so that's good. With time and patience, you'll get a care team together who takes you and your son's concerns seriously. I'm sending you and your son my best wishes for success!

 

[Ylva]

Reminds me of when Silberman explained in an interview that something dawned on Lovaas (imagine that – Lovaas! Had an epiphany!) while he was working with autistic children who had spent their lives in an institution. He realized that they didn't behave oddly because they were autistic, but because they had grown up in an institution.

If your son's autism doesn't suit his speech therapist, remember that those other kids might have other things to deal with than just autism. Not all parents take kindly to the diagnosis, for instance. Also, severity and comorbids. I don't know a gentle way to point this out to her.

And just in case the analogy works, a health care professional would never say, "you just have a hairline fracture, some of my other patients have broken bones in their bodies, so compared to them you don't need any treatment at all (therefore, you don't need any treatment at all)".

Diary Of A Mom is the blog for all autism moms who need hope, because that blogger's kid has severe autism, not aspergers, and she still pulls it off.

 

[AsheSkyler]

Are there any good autistic groups in your area? If you could find some that have a lot of adult autistics in it you could ask them for tips and tricks dealing with the worse parts, and of course network with other parents who learned how to deal with the very young issues like potty training. We here at AC don't mind sharing ideas either.

Some of the general advice around here regarding meltdowns is to pinpoint the trigger. Preschoolers aren't the best at communicating verbally, but you might can try asking him if different things bother him. Sometimes it's obvious, like my kid HATED loud noises as a baby (although he's plenty loud enough now), and sometimes it's not so obvious like those evil little sneaky wires they use to attach tags to your clothes. Even though we're pretty sure my kid is normal, or as normal as our family ever gets, he does kind of have to get treated like a test subject like all firstborns do to find out what he likes and doesn't like. His potty training got a lot easier when we started letting him go commando and avoided tightie whities.