Rejoining the story of my trip to the White House last week for the autism conference – (click -> here <- to read parts one, two and three.) As a reminder, what follows took place in the Community-based Services breakout session.
Unfortunately, where government is concerned, just because you’re ready to speak doesn’t mean it’s your TURN to speak. So I had to wait.
And then wait.
Enough of us were clamoring to be heard that Assistant Attorney General Perez decided part-way through that we would change tacks and simply go around the table in order. It was the only hope of allowing everyone the opportunity to say at least some of what they had come to say.
Unfortunately, the direction in which we were rounding the room left me at the end of the pecking order. As time was running short, I worried that I may have come all the way to Washington for no other purpose than to shakily introduce myself and then listen to everyone else speak their piece.
Most of the subsequent speakers continued the conversation about adult services and the lack of transitional support. One woman spoke at length about community integration, talking specifically about the importance of consistent work within the community in order to build relationships over time. She referred to the community as the ‘only real viable classroom’. I took notes. I knew I’d need to come back to that.
She kept talking. Time was running thin. This is the White House, you don’t get to say, ‘Oops, sorry, meeting ran over.” Now or never. Hands were in the air. She kept talking.
I understood that she didn’t want to give up the floor, but I didn’t go down there to listen. None of us did. Every one of us in that room had something to say. Something that to us meant everything. Every one of us had managed to extricate ourselves from our daily lives and our families – left our jobs, found care for our children, got on planes and trains that many could ill afford – to be there. Every one of us was desperate, DESPERATE to be heard. What in heck was I going to say the Diary community – to YOU – to all of the parents and the children who I had vowed to represent? Sorry, guys, this other lady really wanted to talk?
I became that kid in class with his hand up silently pleading, “Ooh, ooh, pick me. PLEASE. For the love of God, pick. Me.”
AAG Perez reminded us AGAIN how limited time was before pointing to the last three speakers. It would be me, then Katie, then the young man from Vermont.
I took a deep breath and tried to figure out how to wedge everything I had swimming in my head – all of the foibles of the system, all of the inequities in levels of care for our children, all of the confusion and desperation and frustration experienced every day by parents in our community – into three minutes or less.
This is the gist of what I said.
“I’d like to echo what the gentleman from Virginia said earlier. By far, the best way to mitigate the severity of the vast needs of the next generation of adults is to address their needs as children.”
I spoke directly to the government officials as I continued.
“When your child is diagnosed with Autism, you’re told by a neuropsych or other medical professional, ‘Congratulations, your child has a life-long neurological disorder. Have a nice day.’ They send you on your way with the understanding that you are to turn to the school system for ‘treatment.’ The school system then sends you back to the doctors. Within very short order, our children become ping-pong balls. It’s the same theme that we’ve been hearing from those who have been talking about the transition to adult services – there’s no blueprint, no map, no real process to follow outlining who is responsible for what or where to go for help. There’s zero guidance and nowhere to turn for real support.”
“It’s that complete lack of support,” I said, “that leads to the tremendous inequity in service levels that we see from state to state, town to town and even child to child within the same school. Because parents are left to their own devices, each child’s services can hinge on whether or not their parents are educated, have resources and connections and an understanding of the law. With all of that, they MAY be able to get their child what he or she needs. But if they don’t have money, don’t speak English as a first language or don’t know the right people or live in the right place, they may well be out of luck. Add in the fact that, well, in so many cases cats don’t have dogs ..”
AAG Perez cocked his head as I said ‘Cats don’t have dogs.’ He was obviously a little confused. But I knew that many of the parents in the room caught the reference as they nodded and a few even laughed. I explained as quickly as I could.
“I have found that many parents of children on the spectrum are either somewhere on the spectrum themselves or at the very least, struggle with some of their own social challenges and anxieties, which, as you would imagine, can make the whole very political process of advocating for one’s child that much more difficult.”
I didn’t want to go too far afield, so I circled back to my point.
“So there in lies the problem. We end up with this tremendous inequity of services that is not based on need, but instead on access and the ability of parents to advocate. And that CAN’T be OK in this country. It simply can’t.”
AAG Perez was listening intently, but he was also watching the clock. I had so much more that I needed to say, damn it. I narrowed it down to two more thoughts and barreled forward.
I nodded toward the woman who had spoken about the importance of creating roots within a community. “I’d like to return back to what you said earlier.”
I looked down at my notebook and read from what I’d written.
“You referred to the community as the ‘only viable classroom for our kids’ and I couldn’t agree more. You talked about the paramount need for consistency when working to establish relationships within the community. Again, I agree completely. So what about our military families? According to the DOD’s own numbers, one in eighty-eight military children is on the spectrum. Along with a HOST of other challenges, I can tell you that it is impossible to ‘work consistently to establish relationships within a community’ when you move every two years. And as we know, the military moves these families without regard for or any apparent understanding of their children’s challenges.”
The commissioner was nodding. It seemed that this wasn’t the first time she’d heard this. I continued.
“Not to mention that Tricare is an unmitigated disaster for these families.”
An audible groan went up around the room. It was obvious that at least someone knew what I was talking about.
“If we’re going to take care of anyone’s needs, it’s GOT to be those who are risking their lives in service to this nation. It’s simply unconscionable not to.”
AAG Perez nodded and wrote a note, then looked again at the clock. I knew the hook would be coming soon. I had less than a minute left.
“Lastly, I would say this. And if there’s just one thing that you take away from today, I hope that it’s this: As we’ve seen in the room today,” I nodded toward Idil, then Katie, “autism is a VAST spectrum, encompassing the sum total of the human condition. On the one hand you have people like Idil, fighting for a severely disabled son who has no words and on the other, you have articulate, incredibly successful folks like the ones sitting here today. Their needs are not only widely disparate, but can, at any given moment, be contradictory. I implore you to understand this one thing – Autism is one word, but there is no one autism. That said, there simply can’t be one approach to addressing the needs of people with autism. As much as I appreciate what we’re doing – and I am so grateful for the considerable time and effort that you’ve each put into being here today, this is really just a beginning. A great beginning, but a beginning nonetheless. I hope that as you move forward with this, you will make an effort to break the conversation down much, much further into subgroups divided by age, by severity of impact and by myriad other factors. ”
I knew I’d already exceeded my time. There was so much more to say. I could have talked for hours. But my time was over and it was Katie’s turn to speak. I reluctantly turned over the floor.
But while I may have been out of time, I wasn’t out of ideas. As Katie spoke, I surreptitiously reached into my folder and pulled out the printed copy of my letter to the president. Then I slipped a picture of my beautiful girl out of my handbag. I put them together on the table in front of me.
I was in the White House – and I’d be damned if I wasn’t going to make the most of my time there.
To be continued.