Originally published in Autism Asperger’s Digest, July-August 2008

Right on the Money

Having been involuntarily conscripted, as most of us are, into the world of autism well over a decade ago, I’ve had the opportunity to observe many things that have changed monumentally and many things that need to change but have remained stubbornly static. Sometimes it feels like I’m sitting on the 50-yard-line of a game whose lead keeps see-sawing back and forth. Football teams have huge play books, because they know there is no single game tactic or strategy that will work every time against every opponent. So it is with autism too.

Among parents, teachers and other grassroots groups with whom I interact, two subjects are becoming increasingly prevalent. The first concerns groups wanting to do fundraisers for autism awareness, research, education or services. They ask my opinion as to what organizations might be worthy recipients of their contributions. Where will their dollars do the most good?

The second group is often a subset of the first group. They are the deeply frustrated and sometimes desperate parents whose child has been flagged as an autism “possible,” but doctors and services in their area are so scarce that the wait for a diagnostic appointment can be six months or more. (If it comes at all.) They see this six months as an eternity of lost intervention time. And if it’s only six months, they may still be the lucky ones. In many areas, even children identified with autism either go without services or struggle on through schools whose staff may have little background or training in autism.

These two subjects are as one in my mind. That is why groups who venture to ask me how their dollars might be best spent get a grassroots answer: reach out to your own community. Tie your bootstraps to your school’s and pull up on both of ‘em at the same time.

This in no way denigrates the importance of the work being done by national education and research organizations or by university-based programs that address diagnosis, treatment and services. So please don’t write to me about how wrong I am not to support institutions that serve the greater collective good. I do support them, through memberships, pro bono work and participation in hundreds of their activities.

But when asked to make a personal choice, choosing the greater collective good over my child’s individual good is not something I am able to do, and here is why.

My husband and I, alone, made the decision to bring our child into the world. The child had no say in it. His well-being is first and foremost our responsibility, not that of some bureaucratic entity whose funding amounts to – let’s be honest – a political soccer ball. Nothing is or ever has been more important to me than knowing that on the day I leave this planet, Bryce will be OK on his own. NOTHING.

Parents who are frustrated with the lack of knowledge and training at the local school level need to realize that in terms of special education, autism is a relatively new kid on the block. Yes, individuals with autism have always been among us, but the rise in its prevalence these past few years has been breathtakingly steep. It’s happened at a time when most school districts are battling for every dollar they get and juggling not only an influx of students with autism, but English Language Learners, not to mention increases in “traditional” learning disabilities. Adequate teacher and staff training takes human resources and money, two things in very short supply in most districts – even “good” ones. I’ve always been haunted by my experience with Bryce’s excellent third grade teacher, who told me that she was very excited to have Bryce because she had had no students with autism before. I suggested to her that if she had been teaching 35 years, she had had many students with autism but just didn’t know it. I will never forget the conversation we had a few weeks later when she told me, yes, she realized now that she had had dozens of them. “How much more I could have done,” she told me fervently, “if I had only known!”

All of this is to say that, when I am asked, I urge parents to re-invest in their local schools. Every teacher or other staff member who comes away from a training, a conference, a workshop or even a book with new knowledge about autism and new techniques and tools for effective teaching of our kiddos is a pebble in a pond. The ripple effect of that training benefits not only your child, but every child with autism who enters that teacher’s classroom for as along as s/he teaches, AND every neurotypical child in the classroom who is able to see and experience his classmate with autism as a vibrant and viable student, friend and citizen. The power of one is an amazing power, indeed.

Here’s a real live letter I received recently:

“My son is 12 years old and has Asperger’s Syndrome. For the first half of this school year he was mainstreamed with supports. (It) was a total failure; the school day was too long and the sensory overload was constant. In addition, the school created a very punitive environment for him. He was given school suspensions for putting his head down, ‘gazing,’ and received 12 ‘tardies’ for getting lost in the building and being late to class. Needless to say, after a while he completely shut down and would not go to school. I called a meeting with the school, and he was placed back in the self-contained classroom. He is by no means in a classroom with his intellectual peers but at least he is willing to attend school again. We have been charged with truancy and have been summoned to court. I do have a letter from my son’s treating psychiatrist but it counts for nothing here …”

Talk about a learning deficit! As long as ignorance about autism runs this deep at the grassroots level, I will continue to press the case for local resources. But it doesn’t stop with our schools. The need for first-tier training extends to all who come in direct contact with our kids, and that includes parents and auxiliary service providers. Children with autism are not the only ones who are on a spectrum, a developmental continuum. We who live with them and work with them are a Swiss cheese of understanding autism, too. To fill those holes, we need to help each other one-to-one.

Earlier this year I led two round table discussions at an autism conference in New England. I put forth the question of where funding was most needed. The exchange that followed was quite lively.

Teacher training! cried the parents in the group. Some teachers, they said, don’t even understand the basic characteristics, like sensory dysfunction.

The teachers in the group returned the volley with, how about parent training? We give workshops and only four parents show up. We’re expected to fix everything in a few hours a day. A parent fired back saying that she is always one of those four parents who show up, and when no further workshops are offered due to low attendance, she is effectively penalized for the non-actions of others.

Parents and teachers found common ground with the ardent wish for more paraeducator training. Parents felt they had a right to expect a para to have training in autism (many don’t) before working with their child, and the teachers lamented having to spend the first half of the school year training the para in addition to teaching the children. Each year, it starts all over again with news paras and new kids. And both groups noted that being a speech or occupational therapist does not automatically equate to being well-versed in autism.

What is clear to me in all of this is that there is no single “right” way to spend precious limited resources, whether tax-based or privately raised. Within the spectrum of our children’s needs, there will be times when trickle-down thinking and spending is needed and times when the grassroots effort will reap extraordinary results. Either way, I am reminded of the words of the late great anthropologist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”

© 2008 Ellen Notbohm | Four-time ForeWord Book of the Year finalist Ellen Notbohm is author of Ten Things Every Child  with Autism Wishes You Knew and three other award-winning books on teaching and raising children with autism. For book excerpts, to contact Ellen or explore her work, please visit www.ellennotbohm.com.

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