Disclosure of Autism – Part Two

I’ve been discussing disclosure of autism in my last three blogs. Should you disclosure and to whom? In my first blog I discovered how another parent views disclosing her son’s autism and added my personal views. In my second blog, I discussed a recent encounter with a mother of a child on the autism spectrum.

And, what about spending an hour talking with that parent?

How do I feel about helping other parents?

Helping other parents is what I must do.

I must “pay it forward.”

We were so incredibly lucky with our son. We had help early on and it was a decent economy in California. My son got all the services we asked for and we were treated very well. I also had a “personal advisor,” a friend who worked directly with autistics. She got plenty of phone calls from me early on.

At first, we kept our son’s autism basically to ourselves. The friend knew, of course, as did one other friend, who happened to be a pediatrician. One relative knew, but we did not tell our respective families for two years.

Why not?

First, we wanted to focus only our son.

Second, we didn’t want to get distracted by naysayers. “Boys develop late.” “You’re panicky new parents.” “Don’t make stuff up just because this is your first.”

We wanted to avoid all of that.

Third, we didn’t know enough about autism to be able to competently discuss it. When we did face questions, we didn’t know how and why autism applied to our child.

When did we disclose his autism and how?

Eventually, we disclosed to our families and close friends. Our son was doing fairly well with his services at that time and we felt confident to be able to explain autism.

Later on, I joined an autism organization and connected with the autism community.

I felt a bit sad about not connecting sooner. Turns out, the autism community strives in the “pay it forward” thinking. I guess I was afraid to reach out.

What happens when I talk to other parents these days?

Sometimes it’s easy, sometimes not so much. I do it and love doing it. But, inside I sometimes feel badly for parents with young children.

Why?

Because I felt we had been treated better back in 2004 and 2005.

Or, to put it another way, I see families being pushed aside and there’s not much I can do about it.

One example is the mom I just talked to. I felt they were being pushed off to the side. Their concerns were being muted and not hit straight on. The IEP team was failing their child.

While talking to this mother, I realized she wasn’t the problem. She had a reasonably good handle on the issues and had some ideas on how to fix them. She was trying very hard to stabilize things with her son.

Even though she came across to me as a reasonably educated autism-mom, I was still stunned by the walls she was running into. She was doing all the right things, calling two IEPs, and yet the school was hesitating on providing what her son really needed, an aide.

To be fair, our school had a transition over the summer. New principal, new RSP person, new district psychologist. All at the same time.

The mom and I discussed the regime change and how it didn’t helping her because things were promised to her at the end of the last school year and they didn’t happen.

And, things were rough during the first two months. For example, I advised her to really dig for information from the teacher. I told her we had this teacher and she likes to tell parents that everything is great. She likes to hide the truth. We had learned that about her.

Why is the truth important?

Because we don’t live with our heads in the sand. We like to know the truth so we can deal with what’s really happening and assist in fixing it.

So, sometimes it’s hard for me. I want to help, I want to talk to parents who are in the position we were in a few years back. But, it’s hard when I see the “wrongs” and know in the back of my head that we were treated a bit better. For whatever reason, it just happened that way.

I try to give advice, talk to the IEP team, talk to the RSP person, look into strategies on your own. I give them my phone number and let them know they can call me.

I hope that things improve and I hope problems get resolved without too much angst on the parents.

I can encourage parents by telling them that things will get better. Keep talking, trying, push, make your phone calls, don’t sign an IEP unless you are completely satisfied. You are your child’s advocate. You’re a strong person and you can do this!

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