Autism Advocacy Never Gets Any Easier

The Autism community navigates an arcane, often unjust system for basic needs.

Psychology Today, August 20, 2019

Whatever doesn’t kill you cures you, or so the saying goes. We are strengthened by adversity—unless we aren’t. Some kinds of adversity, are not Nietzschean, sweeping, and dark. Some are more just plain uncomfortable and irritating, like a constant bumping and bruising.

Having a child diagnosed with autism is more the latter kind of struggle. Not because of the child. Because of the advocacy work you must do in a system that is arcane at best.

When my autistic son was first diagnosed, 26 years ago, the frequency of autism diagnoses in California was “1.1 to 11.0 cases per 1,000 births during birth years 1987 to 2013” according to a CDC study. Autism was thought to be very rare. And even if there had been an Internet I’m sure resources would likely have been poor. My town—a mere few blocks from the famous Boston Children’s Hospital and only a few miles from Massachusetts General and Harvard University—had only two books on autism in its library and one of them was the Diagnostic and Statistical Manual—not recommended reading for the fragile, newly-diagnosed family.

I had to become strong when I was weakest, I had to ignore my fears and sadness and put on a neutral face. I had to understand that people who were there to help—teachers, education administrators, specialists—were now also our adversaries because they controlled the scanty supports and services Nat would need.

Fast-forward to 2019, and we now have so many more resources: autism specialists, behaviorists, classrooms, curricula, support groups, literature, job supports, protective laws and public funding for autism-specific services —in short, we now have entire institutions devoted to helping autistics and their families. Yet we still have terrible obstacles that block access to them.

Unlike in 1992 when my Nat was three, the framework of a service-oriented system now exists, but from the moment one receives an autism diagnosis, the individual or parents still must figure out on their own what their particular ASD-related needs are and how to get them met.

Once your public education is over, the services landscape becomes downright wintry and barren. There is no mandate nationwide that requires supports and services for autistic adults. And yet now the frequency of autism is 1 in 59. But the Department of Developmental Services, the state agency that typically takes over from the school system, is generally severely underfunded (no mandate to do so), and so families must figure out on their own what is available and how to get it. You’re not automatically eligible for any resources at all, unless your need is very severe. Then it is up to you or your family to prove this need.

Every now and then some rays break through, but never a bright shining beacon; most of the time it is a watery, dull light. In my own state of Massachusetts, for example, there is good news and bad news. The good news is that our DDS has just asked for input from families and self-advocates about services and supports. The bad news is that the format of the request is in such Kantian obscure jargon with surgically precise requirements in terms of how to fill the thing out that many will throw up their hands in frustration. And Massachusetts is by far among the most enlightened of our states when it comes to autism help and funding.

Still, we are lucky to be asked at all. We have come so far in terms of what’s out there for our autistic loved ones—in Massachusetts there is actually some separate funding available for certain autism-specific services, and a stakeholder-driven commission to oversee autism legislation and make recommendations accordingly. And yet as Cathy Boyle, founder and President of Autism Housing Pathways says, “Honestly, it’s the basics—like getting staff to use visual supports, understand a sensory diet, engage residents in household tasks, opportunities to be self-employed that are missing [from the adult services system]. And that is really concerning.”

Boyle gives some excellent examples of what families and self-advocates can ask for when they are called upon to give input. These examples illustrate those basics, and what is still missing—even 26 years later.

• Sensory-friendly day rehabilitation (dayhab) programs, encompassing small groupings and quiet environments.

• Day programs that provide the range of visual supports that some individuals require to thrive.

• Quality autism-friendly day programs for those who wish to work but can’t work competitively or in a group site.

• Group homes designed for individuals with a social disability, who currently are forced to co-exist with other individuals who may push all their buttons. Looking to the future, better outcomes would be afforded by group homes that allow each individual to have their more of their own space. This will allow individuals to retreat, and avoid conflict, while still permitting social gathering when desired and appropriate.

• Housing models also need to be developed for those with severe medical conditions, as many families fear placing their children in a typical group home, even though they qualify.

For any of the above to happen, there must be parental pushback and an increase in federal funding sources such as Medicaid and Social Security.

The struggle doesn’t really make us stronger, just more tired. But sometimes pushing back, making that extra effort and contacting a legislator, voting, writing a letter, or filling out a Byzantine form—actually gets results for our loved ones. And so, if stakeholders are asked—as they have now been in Massachusetts—they must respond. It is the families whose demands over the last few decades have put autism on the map. It is the families and self-advocates who are closing the institutions, pushed the ADA into existence, and who will force our government to the next level. It is inconvenient, muddy, unpleasant, and time-consuming. It never ends. But we have indeed made some progress and if that takes regular irritating and discouraging work, then that is what we must do. It’s better than what I had when Nat was little—or what the Institution inmates had before him. At least now we have lots of company who share our complaints.