When do you gear up for an autism fightWhen do you gear up for an autism fight?

When parents have been been in this “autism business” for a while, we sometimes can feel a fight coming on.We’ve developed a radar, we see the signs. Your gut tells you that a new aide isn’t working out or a program needs to be changed or your child needs a service that he or she isn’t receiving.

I’ve had that radar looming before. When do you gear up for an autism fight?

One time, my child’s social skills services was being provided by a California regional center. My child is a client of one of the 22 California regional centers that provide services for children on the spectrum.

So, when do you gear up for an autism fight?

At one point, my child had two social skills groups. Unbeknownst the regional center and the social skills facility were not in agreement when it came to renewing one of my son’s social skill classes. As a result, my child’s services were operating under a 30 day contract in order to give him services while the parties tried to work out an agreement.

My child’s regional center was refusing to re-up the next six-month contract because they claimed to have questions regarding his services. They were questioning the legitimacy of the second class.

This was also a time when the economy was in a downturn. The regional center wanted to cut funds wherever they could.

After the 30-day month was up, I was informed on the same day of my child’s social skills class, that the 30-day contract had expired and the second social group was being pulled.

Right after that phone call, I knew I was in for a fight. I was about to gear up for an autism fight.

I had to get some information because I was upset. First, I was upset at the lack of being told about the dispute (and the 30-day contract instead of the usual 6-month contract).

I was angry at being left in the dark.

I was especially angry at the social skills facility. They knew me. My son had had services in their facility for over seven years. They knew I was an advocate-type mom.

Now, I was less surprised by the regional center’s lack of communication. Perhaps it was unintentional on both sides, but in my experience I have found the regional centers were not always great at communicating.

For example, like school districts, regional centers sometimes act more on the theory that if the parent don’t question something, than they’ll never know something is wrong. Ignorance is bliss to a regional center. And cheaper.

Regional centers in California are overworked and underfunded. However, I have learned over the years NOT to expect forthright information.

In this case, the regional center opted to simply deal directly with the social skills facility. Even though they represented a client–namely my son. They dropped the ball.

Therefore, I have always relied on the autism facilities to communicate with me.

Second, once I was in the loop, I made a phone call to my child’s service coordinator. I demanded to know what was going on with my child’s social skills services. She was unavailable on that day.

She called me back the next day.

Right off the bat, she had some information that was wrong. I had to correct it.

Then, she promised to attempt to work with the social skills facility to “see what we can come up with.” She thought another 30 day contract was possible each party more time to work this out.

For the month of December, my child was put on another 30 day contract. 

I spoke at length with the person at the social skills facility who was handling the situation. The bottom line to the conversation was that they were still working out the social skills services but had no further information.

When do you gear up for an autism fight? Was I gearing up?

Oh, yeah.

During the second 30 day contract, the social skills facility had to quickly put together an assessment/report on my child. In the report, they had to defend the position that this child (my son) needed to keep his second social skills class. They have to defend their professional opinion. It is no longer enough for professionals to inform a regional center that a service is still needed.

The facility had to put together a rushed report, during the month of December. They only observed my child twice during this time. 

The other issue I was having were certain comments I was hearing. The social skills person was telling me that the regional center was not only questioning the second social skills group but they were saying things like, “The child has had social skills for 5 years and should be able to complete social skills training within two.”

This thought was like a bomb. No autistic child can learn social skills “within two years.”

The regional center was trying to institute new policies that basically amounted to a timeline. They were establishing deadlines.

Are you kidding me? Lets see our kids finish what they need in life on a deadline.

The fight was on. 

I sent an email to my child’s case worker informing her in writing that I wanted to be thoroughly informed of what is going on with this situation. I called her on that Monday to follow up that she had received the email.

My husband and I discussed this situation at length. We decided that the situation sounded like is boiled down to a budget cut.

It was terribly sad. Someone within the regional center system, obviously someone without a child on the spectrum, believes that children on the spectrum can learn social skills in two years. That thinking was considered to be standard thinking, all in favor of cutting funds.

There was no way our child’s regional center had the right to put a timeline on our child’s ability to learn how to be social. Especially when it so blatantly has to do with saving money. Regional centers are supposed to be committed to our kids. There is no timeline for children on the autism spectrum. Each child is different. It is unfair to think in any other terms.

Still, we lost the fight. It’s a shame, but this is the reality of some systems.

But, take heart…and learn how to fight. Read this and find out why.


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