Living with Autism: A Parent's Perspective

I was sitting in a meeting the other day and talking with an individual that was extremely of being involved in the closing down of the “institutions” in Ontario that left so many low functioning autistics without a place to stay when their own families could no longer take care of them.

What distressed me the most about the conversation is that this person did not realize how vital these institutions were even though they were not the best possible option.

I personally am a fan of inclusion however, I also feel it is not always the best case solution for every child.

See the problem that arises is that each individual with autism is distinctly different, each program for each autistic child needs to be developed specifically with that child in mind and not a cardboard cut out that is the same for everyone.

What confuses people is one basic problem. Psychiatric classifications terms a very wide range of people as autistic. This includes people like Albert Einstein and Ari Ne’eman as well as those like Brian Nevin who (at the age of 20) was unable to even realize that if he only unbuckled his seat belt and got out of the van he would not die from the intense heat, or the 50 year old non verbal woman in Long Island who was repeatedly beaten and abused by staff at the group home she was staying in.

People in general see the Einstein’s and Ne’eman’s and forget the Nevin’s actually exist.

This is like using the word Cancer with out differentiation between breast, prostate, bone, leukemia etc. or using the word Religious without the differentiation between Christian, Jewish, Muslim, Mormon, Wiccan, or Satanic.  All are vastly different and all have their own issues, but when it comes to Autism there has been a serious attempt to constantly lump all Autistics into the Einstein and Ne’eman category without realizing that they are by far the lowest percentage of autism patients in the world.

The larger part of Autistic patients can likely function on their own but they do have behavioural issues that do need to be monitored constantly as well as many also have a lower intelligence then many of the “normal” individuals.

While we are fortunate that our son can never be classified as being of low intelligence he does have issues that make him on the rougher end of the scale. He has the behavioural issues (they are improving but they will never disappear completely), he has the flight issues which must constantly be a concern and he is essentially non-verbal, he does have some words and his vocabulary is growing but those who do not know him would have extreme difficulties understanding him.

The problem is that when these well meaning people shut down the institutions saying they were inhumane what they did was dump a lot of people onto the street that had little to no concept of how to function in society and a society (and more importantly a police force) that had absolutely no concept of how to identify them or how to effectively deal with them so that they did not become a statistic.

What is not generally understood about Autism is that one of the foremost identifiers is the lack of understanding of social behaviours. They don’t generally present the correct social response to a situation. They are not likely to understand that a belligerent police officer is not a physical threat but would instead consider it a valid threat and this has killed and jailed more then one individual. Part of this is because the police have not been trained to understand the various mental illnesses and how to recognize them but also because the individual does not have the ability to tell the difference.

We do need to change how we look at autism because without changing how we look at autism we are going to be in a serious situation where the stress of getting care for our children after we die is going to kill us faster and put them in a dangerous situation that much faster.

Autism needs to be broken down into categories and treated like the various levels of illness it actually is and facilities need to be developed so that when our children grow up they have the level of care they require. The level of care needs to be tailored to each individual and not to a specific one size fits all program that benefits no one.

I have found in looking around that there is the belief that we must fight for everything our children need to survive.

I have also found that it is essentially true, but, there is a catch.

In the large majority of cases a hard core confrontational approach does not work. It requires a friendly approach, but a constantly present, friendly approach.

In our sons school, my wife and I are fairly well known (as is our son) not as troublesome parents who are constantly fighting with the school and the educators but as a constant, vigilant presence always seeking to get the best for our child but never aggressive or confrontational.

While I have always felt we get the best (or fairly close to it) as possible care for our son while he is in school, I have never before realized just how much of a difference our approach makes in how both we, and he, are dealt with by the school and his support system.

Recently I have heard discussions amongst other parents of special needs children and the difficulties that they are having with the school. Listening to the discussions, and the difficulties they are having with the school and the district has led me to believe that our instinctive non-aggressive approach has been by far the more successful approach and that our son has benefitted greatly from this.

By having gotten the necessary diagnoses and having made every possible effort to make sure that our son was classified accurately (instead of artificially improving or worsening his condition) we have earned the reputation of parents who actually care for the progress of our son, as well we have gained the reputation of being realists who seriously want the best for their son and are willing to work hard for the best interests of their son without serious conflict with the school.

This is not to say we don’t disagree with the school at times or that we silently suffer through things we feel do not advance our son, what it means is we give them a fair listen and usually a real good try to see if there is any chance it will work, it also means that when we make a suggestion in his care then normally the school will attempt to make efforts to work with us to try our suggestions out also.

This is not to say that every school, in every district, is just as workable but what it means is that you have two real ways to work with the school. Aggressive and confrontational and constantly fighting to make sure you get what your child needs or you are non aggressive, non confrontational always friendly presence constantly working with the school to get what you can.

my suggestion is this always try the non confrontational approach first, give it a fair chance and realize it means actively interacting with this school in a friendly easy going way. If you find this does not work that well you can easily ramp up the aggressiveness to the point where the school/district reacts to meet the needs of your son (in some cases this even requires court action) but always remember you can ramp up your aggressiveness to get results but trying to go from aggressiveness to non aggressiveness will be usually met with hard feeling and distrust after a history has been established.

Always remember the needs of our children are the most important thing to us and it is our job as parents to do our best to make their lives the best we can and to give them the most effective tools we can give them to function to the best of their individual ability in the world.  We only fail in our job if we fail to make a real effort to give them the best we can. The results are never a failure simply a realization of just how bad it could have been if we had put forth our best effort.

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