Day 25: My Rant on “Autism Town Hall”

NJ 101.5 did a show tonight on Autism.

They called it a town hall. 

If you have an adult on the spectrum that you care for, it may be worth a listen. They admit that we lack programs and fundings for them.

Some of my key takeaways from this “town hall” tonight….

I don’t care what causes autism. The governor’s Research Center for Autism at Rutgers is wasting valuable money that should be treating the living-breathing persons who live in our own state (which is also the highest in the entire world for autism diagnoses). 

Why are we researching? 

So we can harass pregnant women someday to make a “decision?”

While a “cure” sounds nice on paper, we have enough people not getting what they need. 

Next, they gave us interpretations about what counts as “severely impacted” versus “high functioning [who] need less intrusive interventions.” 

Yeah no. Severe or “HF” …they all need interventions. It’s not just one social skills class to make them less awkward. I have yet to meet anyone where that was a probable solution.

Somewhere between them talking about  “funding streams” while “trying not to generalize” because “every individual is an individual,” my head was about to explode. 

While I am not saying that these super important folk with fancy titles don’t care because it is clear that they truly do, I think they have no idea what the average middle-class family is dealing with though, financially. 

While it is great that we have an ABA mandate, it still costs us all a daily co-pay. And those co-pays add up. Developmental Pediatricians that actually take health insurance have waiting lists longer than Lord of the Rings and the out of pocket costs of paying for one you trust is also astronomical.

Ask parents how much they spend out of pocket per year. It will blow your mind.

While we have more special “schools” in Northern NJ, the Southern end of the state, as well as the entire state, is lacking them as well as inclusive activities and sports opportunities for both kids and adults on the spectrum. 

Childcare issues. I’m not going to elaborate on this because you all follow my blog. You know. 

But “saving for a person with autism puts them at risk [of losing access to programs and resources]” struck me as WE HAVE A PROBLEM! 

Who the heck is saving for anything?

How can anyone start a special needs trust fund when these kids are getting thrown out of typical childcare settings and summer camps? (I know it is not just me because my blog gets nonstop hits on this subject from Google referrals).

And what about the adults? This show just admitted that there is basically nowhere for them to go and no one to help them.

I chuckled during that entire segment because here I am paying endless babysitters all of the money that apparently should be going into a fund.

Walk a day in our shoes.

Lastly, I highly doubt that there is anything that these organizations can provide for me personally unless they plan on babysitting my kid. 

People who don’t have children with autism telling us that we need to create a network of friends and families to help us with our kids so we can advocate. Yeah, it is not that easy. Most people don’t have a village of help on call.

I don’t need peer to peer support. I have met other parents in support groups and they get it.

I don’t need information, I need to go make money.

Not free money. Just to be able to leave my child somewhere while I go and make it. 

“Noisy parents tend to get the best services.”

Here I am with my air horn ya’ll. 

Link to the “town hall”

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