Living with Autism: A Parent's Perspective

I originally saw this story on another blog and felt I should share it

All too often we hear of tragedies involving children with autism.  A few months ago I wrote about the killing of James Alenson by his classmate who was diagnosed with Asperger's Syndrome (see these posts: http://www.psychologytoday.com/blog/radical-behaviorist/201004/aspergers-syndrome-trial; http://www.psychologytoday.com/blog/radical-behaviorist/201004/john-odgren-guilty-aspergers-not-guilty).  Today I ran into the story of Zain and Faryaal Akhter being killed by their mother in Irving, Texas

(read the story in the Dallas Morning News; http://www.dallasnews.com/sharedcontent/dws/dn/latestnews/stories/072210dnmetirvingmom.4a86487.html).  Their mother, Saiqa, called 911 to report that she had killed her children.  She first put a bathroom cleaner in their mouths but they refused to drink it.  Saiqa Akhter then grabbed an antenna and strangled them.  Zain was 5 and Faryaal was 2.  Two young lives taken by their mother.

Zain was reported to have a diagnosis of autism.  Whether his sister also had an autism spectrum disorder is not clear.  Family members were obviously distraught. An uncle said that Zain had been receiving therapy and was showing signs of learning.  There are reports that the mother had shown signs of depression and had told the uncle that she had seen "strange things" in the apartment the family had just moved into.  Though her mental health problems certainly seem to be a major factor in these murders, when she called 911 to report she killed her children, she told the operator she killed her children because they had autism.  She said, "I don't want my kids to be like that, I want normal kids."

There are many thoughts that raced through my head when reading the story.  First was that the Autism Society of America had just held their annual conference in Dallas.  Less than a month later a mother kills a child with autism in nearby Irving.  What could have led to this?  One of the sessions I attended at the conference discussed the programs that had recently been established for providing educational and clinical services to children with ASDs in Texas under new insurance legislation that mandates coverage.  While visiting one of these programs, the Child Study Center in Fort Worth, I was told that the waiting list for services was enormous and that many insurance companies are fighting tooth and nail to deny reimbursement for service provision.  Parenting a child with an ASD can be a daunting challenge, especially when there are few supports in place.  Even though Texas now has a mechanism in place to procure services, it is not easy to access them.

Some parents of children with ASDs refer to autism as having robbed them of their children.  It is understandable that a parent wants the best life possible for their child but autism does not mean that life is over.  Life may be very different than imagined but I'd be willing to bet that most parents find that what they expected of having a child is very different than what transpires after the child is born.  Many persons with autism are very offended by the notion that autism is, in and of itself, a tragedy.  In fact, I've heard many such individuals vigorously protest such characterizations.  Some even go as far as saying that autism should be accepted and not treated.  While I certainly agree that some of the reactions to the behaviour of people with autism could be improved with a better understanding of the disorder, I don't agree that acceptance alone is enough.   But a better understanding of the disorder is not fostered by the newspaper's description of autism.

They state that: "Although people with autism can lead lives that range from being severely disabled to almost the norm, many times, children with autism have behavioural problems, difficulty interacting with others, don't sleep well at night and have unusual sensory issues, such as such as a desire to eat only certain foods and sensitivities to noise and the texture of clothing."

First off, I've met many people with autism that are well above the norm, some well accomplished experts in their chosen fields.  In terms of sleeping, I think there is much to learn about sleep and autism.  Though sleep problems are frequent, a good number of the children with autism I've known over the years have no sleep problems whatsoever.  Picky eating, again are frequent, but many children with autism I've known eat better than most typically developing people.  Similarly, sensitivities to noise and problems with clothing occur but not always.  These are relatively minor quibbles but there are only three established markers of autism (social and communicative abnormalities and restricted/repetitive interests).

What i found disturbing in this story is the lack of support that would allow someone to feel that this is the only option they have available to them.

Autism is not by any means an easy disease to deal with however the children for the most part can be a joy. And yes some children do not achieve as well as others while others excel beyond what the majority of the population have any hope of ever achieving.

We need the support system to be in place to allow us the ability to develop our children to the best of their ability as possible. We need this support system to allow us to develop our children to the point where any aggressiveness they might have is rendered minor or even non existent.

We need the support to give our children the best possible chance we can during their lives because it is highly unlikely that we will outlive our children so either they must be able to care for themselves when we go or we need to have a system in place to protect them so they are not put at risk simply because they have become the victims of autism.

One thing that we have I would almost say instilled in our children from birth is a love of traveling. Both short distances and Long. Both of our older children which includes our Son have travelled by train for a two day trip from Toronto home to NB. Our eldest daughter went by car up there in the first place. We spent the first few years of our married life travelling from one city to another depending on our whims to determine where we would most prefer to spend our life. Our most recent child has not been subject to much more then 4 and 5 hour trips but even she seems to have taken to travelling.

This in and of itself is good because for our son this time is perhaps our most settled times is when he is in the car.  Now there does appear to be some adjustment when we trade in our vehicles but in general in the car he will sit for hours and play on his leapster game system which to me is a great invention if it was done with autistic children in mind. The reason I say this is because it seems to be largely through this toy that we are able to determine just how fast his mind works and what his abilities are.

Driving time because of this is generally quiet and enjoyable whether it be a shopping trip or a trip to an out of town spot for some fun time. We find in general our son eats better in the car then at home, he is significantly less agressive and in general seems to enjoy the travel and usually the destination better then any normal routine things like home or school.

Destinations appear to be of no concern as he even appears to enjoy driving for the sake of driving, which allows even more relaxation time.

One thing we have found though in recent years is as he gets older he is less and less likely to fall asleep in the car. At first this was not the case but at present it is a very rare occasion that will find our son asleep at the end of a trip unless it is an extremely long day and likely quite warm.

One other detail on travel i have found even at our destination I find our son is significantly less likely to strike out then while at home. I don’t have a real explanation for this but it does appear that his striking out is generally reserved for people who he is around a significant amount of the time such as classmates TA’s and family with the majority of it going to his TA’s and us as his parents. We still have yet to see a serious attempt to strike the baby with one minor incident appearing to be the extent of it and that appeared to be accidental.

So in general in our family we have found that it is best to take him on at least short trips as often as possible to give him as much quiet time as possible however while i recommend at least an attempt to see if this helps others i do not swear in every case it will as each autistic child that i have come across i have found to be unique for a large part

In my life i have two big things that involve my time. One is my family and therefore our autistic son and the other is Politics. As a general rule i tend not to involve the two blogs however there is a point that needs to be made not only to those who follow my blog here in Canada but also those who read my blog in the US.

The point is simple. It is your child the government is neglecting both by minimal or no funding for treatment as well as minimal to no funding for research into the causes of autism and its possible cures.

The only way to make this inequity go away or at least reduce is to get involved. Talk to your politicians when they come around looking for your votes, Go seek them out in their offices, listen to what they have to say and see what they follow up on. When after you exhaust all options to the best of your abilities ask yourself this. What have i learned about how much these politicians care about me and my child. Now once you have your answer, and in very few cases will it be anything but they care little or nothing for us beyond my vote, then decide what can i best do to get my child the care and help s/he requires and how do i get the research that we need.

The only answer is GET INVOLVED. Choose a party that most closely represents your views and get involved. Offer as a candidate. If you feel it is the only way you will get properly represented go as far as to create a new party (remember to come up with a full platform not just autism) though this is a lot of work however, or even run as an independent. Remember 1 in 91 children born today will develop autism that will affect a large number of people and if the governments of our day are not willing to do what it takes to advance autism research then we must make the effort to make our voices heard loud and clear.

We are the voices of the parents with autistic children and we are the voices of those children as well. Together we can get involved and together we can make significant changes to the research and treatment of autism. If they will not help us then it is time for us to do it ourselves

As Summer vacation continues we find more and more we are having to make  greater efforts to find things for our son to do. He is as summer continues becoming increasingly bored and harder to please. Early on in the vacation we were caught with the dilemma of the fact that he was basically confiscating either my wife or my computer the moment we moved from the desk so we quickly came to the conclusion that it was necessary to haul my old computer up from the basement for his and his older sister’s use. Didn’t really work of course as now one takes their computer and the other still tries to use ours.

We do find he enjoys time in the vehicle regardless or where he is going as there is few problems when travelling either short stints to the store or long trips out of town. This means that when possible we do try to take him out as much as possible to give him the best possible option of time out and about. We are also finding excursions to various play parks do wonders to chill his mood and so take him there as often as possible as it is helpful to him to be out playing and is still a generally fun outing for the whole family. Water play parks also seem to catch his fancy most of the time.

We are finding that on occasion he is hitting out and there is a bit more frequency to his hitting though as a general rule he seems to avoid hitting his baby sister and the worst seems to be leaning on her high chair (which she extremely vocally tells him she does not like). His older sister does get some degree of his frustration though in many of the cases it is not much different then normal brother/sister disagreements on who is going to get to do what when and instigated by her as much as by him so while we do discourage it we also acknowledge that if he was non-autistic we would still be subject to the majority of the disagreements anyway.

All said I find the summer is progressing along nicely and will (like any normal parent) be quite happy when Sept the 8th rolls around and we are back to a nice quiet and peaceful household for a good part of the day.

On one side note we are finding that as summer progresses he is getting increasingly vocal while still not near what would be considered normal talking for his age range he is definitely not where he was when school ended so we can very much be pleased with the progress made there this summer

The first week of the summer break is over and it there were many interesting details come out of the week

For one the week started with all of the kids wound up completely an our son climbing on everything in reach including computer desks and tables, walking along the top of the back of the couch etc. So all signs point towards a lively and energetic summer with almost no listening skills.

What was of particular interest is that on Monday he took over my wife's computer and went digging for games. And he found them (take into account he is only 6) and proceeded to start playing them and taking the computer over to the point of us deciding it was time to haul my old computer out of the basement.

We have now set him up with a computer to share with his sister and at least my wife gets on the computer some now.

We have also seen signs of certain things we were looking for.  Our son has started to mellow out a bit (at least this am when his sister was in day camp) so hopefully that will continue and as well he has started to make progress again in his autism so we are hopeful that will continue over the summer break

We are watching the next few days to see what happens on that front