Sacrificing for Our Children

In 1754 one of my ancestors, William Thompson and his wife Ann Rowan immigrated to the New World from Monehan, Northern Ireland, 64 miles from Belfast. There were five other William Thompsons, including my father, after the 1754 William Thompson. William was of Scottish-Irish descent and a carpenter and joiner by trade. William and Ann sought relief from the religious conflicts among protest
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ant congregations in Ireland, settling in Salem, NY among the first 500 colonists joining the community of Dr. Thomas Clark. We, as Americans, celebrate the bravery and courage of those colonists to make the difficult voyage from their homeland; the sacrifice must have been immeasurable.

We are facing a time in the US when Americans find themselves relocating their families, not for religious reasons, but so their children with autism can receive essential treatment that will change their lives, many times forever. Several years ago when I was working with the Minnesota Early Autism Project in Maple Grove, Minnesota we worked with a family that had relocated from west Texas where there were no intensive early behavioral intervention services for their daughter with autism, so she could receive treatment. Many families do the same thing in order to spare their children from the consequences of lack of early treatment.

It is likely this trend will continue and grow, as state governments and private insurance companies deny coverage for medically necessary care for children with autism spectrum disorders. The financial disaster wrought by Wall Street in 2008 brought the American economy to its knees, with devastating unemployment and drastically lower state tax revenues to cover the cost of essential services. While Wall Street paid out $20.3 billion in bonuses to brokers and investment bankers in 2010, parents of children with autism are scrambling, forced to move across country, to find a state and a community within which at least some essential services for their child are still available.

Some governors and state legislators are still deceiving themselves, claiming that early intensive behavioral treatments aren’t really effective, or are fluff, simply relieving parents of the task of parenting their children with autism. There is no question whatsoever that these treatments are effective. None. Zero. There are 27 independent studies, including Randomized Clinical Trials, demonstrating the effectiveness of these methods. No more prevarication.

Let me remind you all what life was like for children with autism when they grew up, before early intensive behavioral intervention was introduced in 1987. By 6-15 years of age many children with autism were placed in large public state institutions for people with severe intellectual disabilities where they received no treatment services whatsoever, because without early treatment, thei
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r behavior became increasingly unmanageable and at times violent. Being placed in such setting amounted to a life sentence. Few ever left. They ended up displaying increasingly bizarre and sometimes even more violent behavior in self-defense. Most never learned to talk. They whiled away their days rocking and twirling in circles, flicking their fingers in front of their eyes in dimly lit wards of terrazzo-tiled institutions with windows covered with heavy metal gratings. The embedded photo is from Willowbrook State School in NY, which was indistinguishable from the building in which we consulted in a Minnesota State hospital in 1968.

If you have the courage to see what happened to children with autism who failed to receive essential early intensive behavioral intervention services when they reached young adulthood, log onto the following website which shows a very old, grainy black and white motion picture we made in one of those institutions in 1968. While many of the men in the film have intellectual disabilities, others clearly have autism. It's on the website of the Minnesota Governor's Council on Developmental Disabilities http://www.mnddc.org/parallels2/one/video/changes.html

I doubt many governors or legislators can look at themselves in a mirror and say, “Yes, I honestly believe it’s a good idea for the children of my state with autism to spend the rest of their lives like this.” They have a choice. It is time to pay the piper. Those who created this fiasco should pay for it, not 3 or 4 year old children with autism and their families.