The Rise of Autism and the Decline of Tolerance

A very good friend of mine whom I have known since kindergarten recently sent me an email.  To summarize he asked me why there is such a huge increase in the number of persons currently diagnosed with autism.

Indeed he raises an excellent question.  Approximately 15 years ago, I understand, the ration of autism diagnoses was something like 1 person in 2,000 or so.  Today the Center for Disease Control and Prevention reports that 1 in 110 births in this country will experience an autism diagnosis.  Among boys the rate is even higher, equaling 1 in 70.  It is a staggering statistic.  It is also most disturbing.  Unfortunately I have no simple answer for my friend.  I'm not sure anyone really does.  From what I have read and based on my experiences, however, I think there are several contributing factors.  As I list them below please understand I am no expert on this subject.  I only offer my opinion and/or experience as it relates to the field of autism.  I am a parent of a son with autism.  I have served as a pastor to many families dealing with autism and I currently work in vocational rehabilitation with various disabled individuals including several with autism.  So what I am presenting here is not entirely scientific.  Nevertheless, I believe it to be accurate.

So here is a list of possible reasons why autism births are on the rise.

1. A huge number of people were at one time diagnosed with "mental retardation" and nothing further.  In the past 8 - 10 years these same people in many, if not most, cases would now be diagnosed with some form of autism. We may conclude, therefore, that a more accurate diagnosis has become available in recent years.  This may explain some of the increase.

2. It is important to remember that the term "autism" has become very broad and general.  For example, it can include a person with an IQ of 50 or a person with an IQ of 140 - - or anything in between.  A few conditions that are often included under the autism umbrella  are Rhett's Disorder, Childhood Disintegrative Disorder, Pervasive Developmental Disorder, Asperger's Syndrome, and a host of Learning Disorders too numerous to list individually.  The individual can be non-verbal or may talk unceasingly!  A person with autism might by very shy and awkward in social settings.  On the other hand, they might equally be a true extrovert who may never know a stranger, so to speak.  Thus it is accurately labeled "The Autism Disorders Spectrum" (or ADS for short).  20 years ago or more autism was primarily thought of as "Autistic Savant".  The character of Raymond, played brilliantly by Dustin Hoffman, in the movie Rain Man is a pretty good portrayal of savantism.  When I was growing up this was the textbook definition of autism and even it was rare and almost unknown by the average person.  I must confess I do not remember hearing the word "autism" until my wife and I began suspecting that our son had some kind of disorder.  We did endless research on our own and began to suspect autism, but I did not know anything about it until we read up on it.

3. Many advocates believe either mercury and/or childhood vaccinations (more accurately, some of the ingredients in such vaccines) play a role in the increase.  The jury is very much undecided on this one!  I remain a fringe believer in this theory but I am not totally convinced.

4. Another hypothesis involves environmental concerns.  This has never really been indentified, however.  I would not at all be surprised to see this revealed in some future study, though!

5. I think, too, that medical schools are preparing doctors in a much more thorough approach to be aware of the early signs of autism and to recommend tests and early intervention.  This is related to Number 1 above as it relates to a more accurate diagnosis.

6. Insurance plays a huge role, too.  As recently as 12 years ago many health insurance plans would not cover anything for a person diagnosed as autistic.  I think part of the reason is that autism was not well defined back then and insurance companies run away from anything that is not cut and dry.  Even 7-10 years ago insurance companies argued among themselves as to who might cover the autistic person.  Let me explain:  most health insurance policies are actually a hybrid of sorts in that they involve a primary company to cover medical expenses and, frequently, a second company or subsidy to cover behavioral/psychological conditions.  These two companies would try to claim that autism was covered under the other part of the policy.  That is, the health division would claim that autism is a behavioral disorder and is covered by the company that provides such coverage under the policy.  The Behavioral administrators of course, claimed it was a physical health disorder and said they won't cover it because the company dealing with that aspect of healthcare should. 

I am speaking from personal experience here!  We actually were confronted with this dilemma for many years from a highly reputable insurance plan.  It was most frustrating as my wife would spend literally 6 hours a day or more on the telephone arguing with a vast host of people in her attempt to simply obtain approval for a counseling session or "wrap around services". 

Since then, there has been so much research and clarity that any insurance company has since been forced to provide coverage for the autistic community.  This, in turn, opened the door for an even greater number of more accurate diagnoses.

This only begins to scratch the surface.  The key to this discussion is exactly what many politicians refuse to admit - - that with the increase of persons on the Autism Disorders Spectrum comes a greater burden to society.  Services are both extensive and expensive.  Few households can afford them "out-of-pocket".  This is true not only for someone with autism but for virtually any disability that might hinder an individual.  Where does the funding come from?  Yes, as stated above, insurance companies will now pay for some such services.  Children under the age of 21 can often find some services available through the Department of Education.  But these all have strict limitations to them.  After the individual turns 21 the problem becomes more severe as now they no longer qualify for the services offered through educational avenues.  This is where government programs become a vital lifeline.  Programs like the Person-Family Directed Support Waiver (PFDS), the Adult Autism Waiver, the Adult Community Autism Program, or the Consolidated Waiver become  absolutely crucial.  However, in this age of budget reductions and ignorance on the part of many, including Tea Party members, we are facing a serious crisis.  Consider:

• Nearly all persons on the ADS are completely incapable of living on their own and supporting themselves.
• The number of such persons increases annually.
• For the past 10 years the greatest increase was found in the 8 - 14 year old bracket.  This age group is now or has recently turned 21 and are expected to be on their own.  Yet the fact remains they cannot exist that way.
• The overwhelming majority of people on the ADS receive health insurance through Medical Assistance (aka Medicaid).  Such funding is on the "hit list" for the Radical Right.
• In addition to medical coverage there is the question of therapeutic and behavioral services.  This is not part of Medical Assistance but does come under DPW (Department of Public Welfare).   It has become another target within the sights of the Right.
• Housing.  A huge issue.  The ADS population cannot provide for their own housing as they typically cannot compete for a job.  They are therefore at the mercy of parents or relatives who are willing to take them in AND PROVIDE ROUND-THE-CLOCK-CARE for them!  In this age of the need for two incomes in most families, who is left to do the care giving?  And if someone stays home to provide care, the added expenses of care giving defeats the goal of staying at home.  It is a vicious and merciless cycle.  Already public funds designated for the purpose of housing in group homes is being cut drastically.  Expect more to come.
• Employment.  The only way most of these people can be employed is through a sheltered workshop that pays little (usually based on piece work rates) or through supported employment (which is my area of specialty!).  But again, to get into most of these programs one needs funding to pay the per diem enrollment fee.  Again, typically this comes through DPW and the Mental Health/Mental Retardation Office.  As you can guess, this funding stream is already declining.  It, too, will shrink more in the future.

So here is the bottom line.  If the Radical Right gets its way I foresee an increase in homelessness.  More and more parents are going to burn out and give up.  This population cannot support itself and will turn to shelters or the streets.  Expect, too, an increase in petty crimes as a by-product in the fight to survive.  All of this translates into increased governmental expenses for police, jails, courts, homeless shelters, food banks, etc.  In short there is no way to avoid greater government spending.  The only question is this:  do we spend in preventive measures now and seek to preserve some essence of dignity or do we invest in cleanup measures after the fact?

As I said, it is a very complex issue.  It is not going to go away.  Rather, it will become increasingly troublesome.  In all honesty I feel the pressing question that needs to be addressed in not "Why is autism on the rise?  Rather, it is imperative to ask ourselves "What are we going to do about it?"  For at this point in history we have no control over the number of autism diagnoses.  We can, however, control our response to this crisis.

We claim to be fighting two wars today in the name of freedom and the protection of our Constitutional rights.  But whose rights are we concerned about?  Are not all citizens of this great nation privileged to the same rights?  Or is it only for those who are rich enough;  those who are smart enough; those who have the right connections?  What about the ones who cannot provide for themselves?  Who will take up the banner of those who are incapable of advocating on their own behalf?  What kind of society are we if we simply refuse to provide a small sense of dignity and value to an innocent person who has no desire to be disabled, but also had no choice in the matter?

The answer is obvious.  If we continue to ignore these issues we will become the mirror image of our so-called enemy.  We will become an intolerant, merciless, cold-hearted and cowardly nation who is unworthy to call itself "free".

gdg  09/20/2011

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