Riches

Posted on July 3, 2014 by SpecialAdd

“Autism is a disease for the rich.” It’s a line from Kerima Cevik’s post on The Thinking Person’s Guide to Autism, and I can’t say it isn’t true. I’ve seen it up close and personal, with my son and some of his classmates. Our son, who scored zero on his receptive language evaluation at age 3, responded wonderfully to what Cevik calls “designer” interventions like ABA, visual teaching strategies, speech, OT, and sensory integration therapy. Within two years we had a more communicative and calmer child. It is an investment that paid off tremendously.

By contrast, I saw parents with fewer resources trying to do the same thing with both arms tied behind their backs. My son’s preschool drew from an economically and ethnically diverse population. Parents without a car can’t drive to all sorts of designer therapies. Single parents who work two jobs don’t have time to attend workshops and trainings. Parents who need a translator to interact with the teacher don’t stand a chance in meetings full of educational jargon, medical lingo and legalese. Those parents loved their children every bit as much as I loved mine, but the interventions that helped my child were not available, not affordable, and not feasible for their children.

But what do we do about it? There’s not really an easy fix. Saying that insurance should cover treatment isn’t going to make it happen. I know, I’ve been saying it for years. And political activism feels a lot like calling my insurance company. Both processes take determination and endurance, and in the end, there’s still so often a loophole. The politicians’, insurers’, doctors’ and parents’ incentives often aren’t aligned, and then there’s no win-win, only slog-slog.

I sort of hope if people were reading this blog, we might be able to come up with some ideas. Things that might get results in our lifetime that don’t involve being on interminable hold, organizing a march with placards or writing watertight legislation. I have a few ideas, and I’m going to throw them out there. Pick them up and run with them or submit your own. It could be a grassroots revolution.

One thing my husband and I thought of was to start a lending library of materials for teachers, therapists and parents to use for ABA, speech, OT, school or home instruction. My husband suggested that keeping the materials in a local library, which already had space, staff and check-out procedures, would be the best way to get things in the public’s hands. Fortunately, the head of youth services at La Grange library agreed, and the special needs collection was born. Part of what is unique about this collection is that it is not just reference materials for parents & professionals, but teaching materials, too. It includes flashcards and fine motor tools, picture books and DVDs, an alert program board game and Super Duper “fun decks.” The collection is receiving a good response to date, and per the circulation reports is getting used regularly. We would love to see the collection grow and for other libraries to embrace the idea of meeting the needs of such an underserved population.

Equal access to materials is of course only one piece of the puzzle – building library collections does not solve the question of funding specialists’ time. Many therapies, like ABA, Floortime, PT, OT, massage therapy, music therapy, and sensory integration therapy, to name a few, require trained practitioners to implement or oversee the programs. Special diets and supplements require oversight by doctors often not covered by insurance. These hours of care will only start being covered by insurance if they have demonstrable results. And from demonstrable results, you get to standard of care.

If you aren’t a scientist, you can still support this effort. To support research into results and help define a standard of care, families can join Interactive Autism Network (“IAN”). By creating an entry in their database & participating in studies, you help them probe efficacy of treatment and prevalence of issues. You decide when and how much to participate. IAN and Autism Speaks coordinate efforts of researchers, give grants and host symposiums. They even alert the media and work to turn this research into policy. So something as simple as filling out a questionnaire and sharing our stories and our data can bring us another step closer to help being accessible for all.

Please consider donating materials to your local library, sign up for IAN, or better yet, toss out another idea. Consider it an act of July 4th populist patriotism. Our kids deserve better. All of them.

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The Key

Posted on April 9, 2012 by SpecialAdd

“So “autism spectrum”.  What does that even mean?” she asks me.

This is the part of the conversation I dread.  As a parent of a kid with autism, I am often asked to talk to others who have just found themselves on this path.  I am always glad to connect.  They tell me their story, and I empathize.  They ask for resources, and I refer.  But the conversation often turns to questions of significance, and I balk.  How on earth do I answer?  What does this mean, for whom?  Are you asking me practically, personally, scientifically, metaphysically?   I am not a counselor or a doctor.   I don’t have a crystal ball.   I try, somewhat lamely, to take the conversation back to their immediate concerns, and what they seem able to take in right now.   But if I could, I would like to give them a much longer answer, full of empathy and encouragement.  I would say,  “It means many things, but less than you might think.  And in the end, you may find, it can mean everything.”

First, many things.  Practically, it means you are probably overwhelmed with decisions and details.  You are evaluating which interventions you will try first, and there is an overwhelming array of options.  It means that well meaning people will start telling you how you can fix this problem, based on a book they read, a 20-20 episode they saw, or their second cousin once removed.   It means you may soon find yourself wondering who to tell, and what to tell them.   It means you may be facing big changes in your child’s schooling or your home life.  It means you will suddenly start seeing “autism” everywhere – in the media, in the grocery store, in political debates.

Emotionally, it means, most likely, that grief and worry are carving through you like a glacier. You don’t want your child to be left out of the talent show or skin their knee, much less cope with a diagnosable condition.  That hunk of gritty, cold ice is shaving off rough edges you never knew you had.  It is carving out room for all you will need to learn and grow.  But right now, it probably just hurts.  It is OK to be sad, and mad, and bewildered.   I’m sure you have blessings to count and know someone who has it worse.  But you get to worry, and you get to feel whatever you feel.

But scientifically, it means less than you might think.  Clinically speaking, ASD means that your child has challenges with communication or social interaction and “repetitive behaviors.” That’s it.  It doesn’t tell you about your child’s IQ or life skills, their personality or interests.  It doesn’t indicate anything about physical health or sense of humor.   It doesn’t mean that your child doesn’t want friends or that your child can’t be affectionate and expressive, even if they aren’t right now.   Even if you know another child with autism, odds are that child may be quite different from your child.

This diagnosis encompasses a broad range of “challenges”.  Challenges with communication could range from a child who is completely non-verbal to a child who is overly literal, has trouble processing auditory input, or makes poor eye contact.  Repetitive behaviors can be all consuming compulsions or occasional hand-flapping.  All of this is subject to change as your child grows.

Because of the limited scope of the diagnosis, it isn’t all that indicative of long-term prognosis.  There is currently a broad range of outcomes.  There are children who never learn to speak, and there are those who hold jobs, marry and write books.  We don’t know the range of outcomes for the children being diagnosed now, who are receiving earlier diagnosis and all sorts of interventions.

And yet, in the end, the diagnosis can mean everything.  It connects you to a community of people who face some of the same issues you are confronting.  It connects you to articulate adults with autism, who can tell you what your child is feeling and how they are thinking.  It can earn you better coverage from your insurance.  It should help you get more appropriate supports from your school district.  It earns your child protection under laws protecting people with disabilities.  It gives you a quick explanation for those days that your child makes a scene or offends Aunt Sally.   It means that you are not to blame, that these challenges are not the result of poor discipline or poor parenting.   It puts you in touch with all sorts of books and blogs and websites that are cathartic, insightful and helpful.  It can give you a heads up to the other sorts of challenges your child may face later on, so you are not perpetually blindsided and bewildered as your child follows their own developmental timeline.  It can also point you to all sorts of opportunities, like modified SAT testing or service dogs.  You may be surprised to find how many museums, amusement parks, theater troops and summer camps are equipped to deal with your child’s challenges, or have special events for kids just like yours.  It means, above all, that you are not alone.

I’m not trying to say “Welcome to Holland.”   I love my son and together we are finding our way, but I occasionally cry all over again when something his peers do effortlessly turns out to be ridiculously hard.  But what would have happened if we hadn’t been diagnosed? What if we hadn’t covered our walls in laminated pictures and worked on sensory integration?  What if I didn’t know how he thought, what he needed, what he might be feeling?  I’m afraid we’d still both be frustrated and alone, instead of in this together.  I just want to tell you diagnosis can be a key.  It can help you get through rough days; it might even open a door to some better days.  It can provide resources that may help unlock your child.  Start to chart a course based on what is, instead of what you wish had been.  Pick up the key and come in.

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