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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When Ari Ne’eman was interviewed in Wired he said Autistic individuals don’t need people worrying about causes and cures.

This is extremely disturbing when you realize that the number of people with autism is now at 1 in 110 babies born and growing. And unlike Mr. Ne’eman many of those (the large majority actually) will never be able to truly function on their own.

Mr. Ne’eman’s aim of improving quality of life and civil rights is laudable but it does not address those who are not going to be able to enjoy them and it does nothing to slow the rapidly growing population that is being diagnosed with autism spectrum disorder.

Autism Spectrum Disorder runs a very large gamut from those like Mr. Ne’eman who are clearly generally able to function in normal life and hold even high powered jobs such as he does, down to those who may never be able to speak and do nothing but sit in a chair, rocking for the remainder of their lives. The problem is there are far fewer of those like Mr. Ne’eman then there are farther down the scale where they will need some level of assistance for the remainder of their lives and unless we address the causes and even perhaps cures then we are going to eventually find ourselves in a situation where a large percentage of our population is used to aid autistic individuals.

Quality of life and civil rights are necessary but so are find and eliminating the causes of Autism and perhaps even figuring out a way to cure those that have it. Most important of those though is eliminating causes of Autism so that we can drastically reduce the number of individuals who are forced to live with this disease. Second to that is the necessity of making sure that all individuals get the best opportunity to function to the best of their ability, through behavioural training to allow them to be able to function as close to self sufficiently as possible.

He also slam’s Dr. Lovaas for attempting to make autistic children “appear normal”. But again he misses the point that the ABA treatment developed by Dr. Lovaas  actually helps a child or adult function within society by being able to care for themselves, earn a living, and generally be functional in society.  It is the difference between being able to express themselves and hitting out at someone. In a child hitting out can be dealt with in an adult this is likely to lead to jail time, all simply because someone did not want to work to help make autistic children better able to express their feelings and issues and instead left them with a high frustration level that resulted in hitting out as the only method communicating.

Mr. Ne’eman’s ideas are great within the context of a high functioning autistic individual but the large majority of autistic individuals are not high functioning. We need to improve the focus on therapy and drastically improve the funding on both causation and therapy research and it needs to be done before we reach a critical mass where the number of autistic individuals requires more people caring for them then the available number of non autistic individuals.

Autistic individuals are not to be feared but they are not a situation we are able to ignore either. We need to find and eliminate the causes of autism and we need to help those who are not high functioning at least reach a level where they can function in society where that is possible.

On the subject of the new DSM-5 classifications I have mixed feelings. This is largely because as it is high functioning aspergers is considered the standard for autism when this is not reality. If this classification comes through one of two possibilities will occur.

1/ The low functioning end will be considered the standard and better treatments will be found because of it.

2/ The high functioning end will be considered the standard and less effort will be made into treatments because the need for it will not be recognized.

While ideally i would love situation 1 to be the result I would have to suggest that history suggests that this new classification system could leave those on the low functioning end fending for themselves.

When I initially realized who my son’s teacher would be this year I was a bit concerned. I had seen the teacher around the school and i felt that she just might be a bit hard and perhaps not the best option for teaching an autistic child. Boy was I wrong. 

When I first met her during our year end interview last year she first got my attention when she noticed a couple of things about my son that made me realize she was at worst extremely observant.

1. She realized my son could identify many of the kindergarten sight words and most of the grade 1 sight words (he had just finished kindergarten) this she realized while his previous teacher had the list underneath a pile of papers (she wasn’t concerned as she didn’t feel it was important enough to share)

2. She realized that my son was quite capable of playing well with his sister (leading her to believe he could play well with others) however when she asked the previous teacher the response was “I don’t know who he plays with” fortunately the TA’s were able to provide those details also.

Now we are almost a month into the new school year and a few details have come to my attention that amazed me.

1. last year my son got 4 “feather in your hat” achievement certificates 3 of which were from his TA and one from his teacher. This year in one month he has already gotten 5 and 4 of them are from his teacher. This tells me that she is not only paying attention to what he is doing but she is engaging him in the classroom.

2. This year due to a work to rule situation amongst the TA’s our son is missing one of his recesses, now ordinarily i would be freaking however instead he is being monitored in the school gym by the local head of Special Olympics and he was invited to join the training program. This is not actually because of his athletic ability but because instead at the age my son is they can do the most to put him in a position to at least enjoy sporting events and he wants to try.

3. My son started this year at a reading level A and within the space of a month has progressed to a C this again tells me just how much his teacher is actually paying attention to him and moving him along at the pace that suits him

So in addition to this my son now gets weekly Special Olympics training in addition to his schooling which is presently including weekly swimming lessons and biweekly trips to another school which has an extraordinary sensory room.

Personally I feel my son will progress extremely far this year under the present circumstances and that is lovely to watch.

CTV British Columbia - Deportee's autistic son pleads for gov't intervention - CTV News

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