Living With Autism: A Parent's Perspective

Drugs are generally not considered effective when dealing with autism. However drugs do have some really interesting side effects that can cause even more grief for autistic children.

The purpose of giving drugs to an autistic child such as Ayn Van Dyke is to “control” their more violent meltdowns and/or even their “stims”. However one must stop and look more closely at autism and understand the basics of the illness to understand why this can be counter productive. For example meltdowns are generally for autistics an explosive release of energy when the child can no longer even remotely handle the situation they are being placed in. Stims on the other hand are a release to allow them the ability to continue to focus and continue on their task.

So what happens when someone removes these opportunities from an autistic child.  In many, if not all, autistic children these releases are caused because the child does not have the ability to explain to those of us who are not autistic that they no longer can handle the situation and need a break. This release is the only way they have to signal us what is at issue and the extremity of the release is a gauge to determine how severely overloaded the child is.

By medicating this release out, these children are not removing the overstimulation and they are not removing the need for a release. What is happening is that the child is losing the ability to show their carers, be they parents, teachers, or others that they no longer have the ability to function in this environment. This results in a more extreme build-up of overstimulation and can instead result in a far more aggressive release from the overstimulation once the medication wears off, or the child’s need for release finally overwhelms the ability of the medication to maintain control over the child.

Because these medications often work to reduce the child’s interest in moving, or participating as well this often can also lead to a more sedentary lifestyle, especially if the child is kept medicated for extended periods of time. This will without fail result in a weight gain. This is often increased because the medication works to slow the child’s metabolism in the belief that this will reduce their need for highly intensive activity but also has the added effect of slowing the bodies ability to burn of calories. Combining these two factors to increase weight gain and then add in a girl’s natural self consciousness about weight such as is likely being experienced by Ayn and it could add to the overload of emotions and the increase in frustration that she feels.

Ultimately the main issue is masking symptoms instead of treating them with therapy is absolutely the wrong way to treat an autistic child and likely does far more harm to the child then it does good for the carer.

What happens when the government agency that is supposed to be protecting our children is one of the biggest threats to their safety, happiness and wellbeing.

That is a serious question and one that is facing a large number of parents not only in Canada but in many countries around the world.

Many child protection agencies around the world are fighting with other government agencies for the few tax dollars available. To receive this funding they must show the need for this funding. To various governments that means that they must have a number of children in care, but more importantly they must show that they are also successfully placing (adoption) a minimum portion of the children that are in care.

This presents a problem as those who are most in need of care are generally the least likely to be adopted as they are often from homes where drug abuse, physical abuse and sexual abuse is rampant and these children often are psychologically damaged and require far more care then most prospective adoptive parents are interested in or capable of.

The children that are adoptable on the other hand are often those who come from caring homes with loving parents that do their best to care for their children in the best way they know how. 

So why are these children chosen. There really does appear to be various reasons. Single parents? special needs children? more then one? Parents who at first glance do not look like they are up to fighting against an unjust system?

The problem is that in all honesty I suspect the problem started so innocently. Somewhere along the line a politician decided that if CPS was to continue to get all this funding that there had to be some “results” and then decided from their throne on high that those “results” would be best shown by the number of successful placements in comparison to the number of intakes.  To accomplish this CPS agencies looked at the numbers and then likely stumbled across a child in their processing that would normally be returned to their family, however in an effort to make the numbers work they decided that “just this time” they would not do the return.

Over time increasing demand to improve placements and increasing funding required to fight parents who objected to what was happening has led to those children who actually required the system in the first place, starting to be dropped from the system. The system no longer has the resources to deal with the children that it needs to look after because it is so busy fighting parents so that they can get access to the children that they can showcase to the government in their reports.

It is time to return CPS back to their roots of helping care for those children who are damaged by abuse and neglect and stop measuring their abilities by statistics like adoptions and instead start supporting them when they do their job properly instead of forcing them to search out innocent well adjusted children to victimize in an effort to appease their government bosses need for statistics and pretty pictures.

There has been a fair amount of discussion over the last little while on the Facebook group dedicated to returning Ayn Van Dyke to her family, about various other cases not only in BC but in other parts of the country and even other parts of the world.

The vast majority of these cases focused on children who were removed from their families without cause, and the vast amount of resources required to reverse these decisions. Other discussions have centered around children who should have been removed and were not, and as a result were killed by an abusive or neglectful parent.

This second group of children are used as a leverage by various child protective services agencies to try to get more funding from governments. The issue however is that in many of the cases, if the children who were removed without cause were returned to their parents there would be plenty of room for those children who truly did require the help of child protective services agencies.

There are, as there often is when these cases comes to light, various reasons pointed to by those outside the system as to why there is such a problem. These reasons vary from the fact that it is easier to adopt out a fairly healthy child then it is to adopt out a child who has suffered severe abuse. There is also the belief that CPS agencies keep homes full and workers overworked so that when cases like this occur they can point to their full system and suggest that perhaps increasing funding could help them find and remove these children in time.

What ever the reason for the discrepancies the fact is that it is becoming fairly obvious that the CPS system worldwide needs a complete overhaul. The reasoning being that there does not appear to be a single specific set of circumstances that lead to a child’s removal.

In my personal opinion no child should ever be removed from their home unless there is a clear sign of neglect or abuse. All children should first be attempted to be placed with family members unless it is highly likely that the abuser will be given sufficient access to continue the abuse at the child’s temporary home.

Medicating children should only be done with full consent of family members, unless the lack of medication will be life threatening to the child and even then religious beliefs of the family must be taken into account at all times.

At all times, except in cases of serious abuse, CPS agencies should be working to return the child to their parent/s in the shortest amount of time possible. The main purpose of CPS should be to make certain that families have access to (or make access available to the family) all supports needed to allow them to be good parents.

Adopting out children and long term placements should be reserved for those who suffer serious abuse, who are abandoned or who are orphaned and a far more extensive effort then is presently made must be undertaken to ensure that these children are not placed in a risky environment.

Amongst other issues that also must be addressed is ways to deal with questions from the general public and the media regarding specific cases.  Because CPS has the ability to hide behind the privacy act there is little ability to determine whether children were removed for valid cause or not. It also allows the CPS workers to imply that the parent’s are not telling the truth when questioned by reporters without backing this up with actual fact. Because of this the CPS workers get a free pass to do as they wish always being able to imply that the public does not have the full story while hiding behind the privacy act to prevent the whole story from coming out.

While I do understand the privacy act and fully support it, I do feel it is often used by government agencies to avoid responsibility for their actions by indicating that they cannot talk about what actions they have taken because it would violate the privacy of those involved.

There is much work to be done to get to a point where CPS actually is a system that protects children and does no damage to families in the process. We need to start that process now.

There is talk from time to time of this or that cure for autism. They range from gluten free diets to chelation therapy and other various attempts. While there has been some minor successes they are always met with the caveat that well obviously the child was not autistic in the first place.

Or were they?

Autism is a sliding scale illness, it ranges from high functioning people who barely are noticed as different at all, to those who are low functioning, with no verbal ability and even possibly low intelligence and they encompass whole ranges of combinations of these factors.

A range of symptoms like this and even varying diagnosis within the ASD label such as Asperger’s, autism, PDD-NOS and other handles actually make this a hash of an illness. The main feature of autism becomes the communications difficulties and the issues with finding the causes and therefore the cures become compounded by the fact that scientists looking at the illness look predominantly at the high functioning end of the scale (generally including Asperger’s and PDD-NOS usually with standard or above average intelligence). Even this group is large and varied and the results are often all over the place. This study finds that there is little evidence of a genetic factor and is likely environmental, another study finds there is little evidence of environmental and keys on a single genetic factor, another study finds a different genetic factor, and we must not when looking at the total body of evidence completely discount the “leaky gut syndrome” either. 

So who is right and who is wrong because obviously they can not all be right with such different results? Or can they? Because autism is such a sliding scale illness and because there is so much variation from the various ends of the scale, the question needs to be asked “Can there be a single factor causing autism, or is the vastness of the scale causing various causes to be overlooked because it is not the case on another end of the scale?” I am starting to believe this may be the case and that perhaps scientists need to start looking from a different perspective when looking at causes and cures.

When Cancer is discussed as an illness, amongst the first questions asked is “What kind of Cancer do you have?” This encompasses the question of malignant or benign tumours, of breast, liver, lung, or brain cancer and various other variations. For purposes of this discussion I am going to focus on two different Cancers and two completely different causes. For example skin cancer is often said to be caused by excessive sunlight while lung cancer is often attributed to smoking. So why then are we not breaking down Autism into it’s various smaller categories and starting to look at each individually to see if we can find a cause this way?

The same holds true for cures. If autism covers such a wide variety of potential causes is it not just as likely that it would also cover a wide range of cures, in those cases when cures may be possible at all. For example the idea that mercury poisoning could potentially cause autism and ultimately be cured by chelation therapy while ridiculed by some begs the question, “Is it possible?” the answer is that if the symptoms fit the criteria for autism and symptoms are generally all that are available at this time to designate a person as autistic then it would appear that chelation can cure some instances of autism and various other potential cures may work just as well.

Does this also mean that any and all autism can be cured? That is to hard a question to be answered. What is important is that the likelihood is that at least some instances of autism can be treated to a reduction or potentially a removal of symptoms, however because there is no hard and fast answers, there is also no guarantee that any given cure would work on any specific individual, and in some cases depending on the severity or lack of severity the question that also can arise is does all instances of autism even need to be cured. Some individuals who lead fully functioning lives may feel that they do not require any form of cure, others who find the illness holding them back may be quite willing to try to see if a cure is possible.

In each situation it would almost have to be up to the individual or their carers to make this decision based on how they feel the results would improve  or impact on their lives or the lives of their child.

However in all honesty I do believe it is imperative that scientists start to look at a more specific group and forget the “autism designation” as the one key to separating these individuals from the rest of the world. When they look at smaller more closely similar groups I suspect they will be more likely to find a cause then by looking at a wide ranging group that could potentially be caused my many varying triggers over such a broad spectrum 

Behaviours are one of the hallmarks of autism.  Ayn for example had behavioural issues at school before she was “removed”,  our son as well spent all of last school year and part of the school year before that with serious behavioural issues and I am sure that if we discuss with most parents of autistics we would find that there is at least a period of time where their child as well had serious behavioural issues.  Some parents will have been fortunate enough to have managed to alleviate these behaviours, still others will have not succeeded yet.

In Ayn’s case the treatment proscribed by the MCFD was to drug her to the gills and hope that her behaviour eased. In our case the situation was  quite weird. First his old school decided they no longer had room for him, this was something we did not really believe and still are unsure of today. Then after rushing around with less then a week till school we finally get him into the appropriate school (his old school was out of zone but at the time his appropriate school was well over capacity). The vice principal basically told us specifically he had a TA that he wanted to be responsible for our son and she was brought in for a meeting with the teacher and our son (he was almost 4 days late for school because of delays in approving his TA). After his first day, while talking outside the school, she suggested that perhaps melatonin might be useful as she used it on her autistic son to help him sleep better. She also indicated that while he was not cooperative he was also not aggressive and this had been a huge issue at the old school.

We did try the Melatonin and yes we do think it helps him sleep better, however the real factor for him in transitioning properly to the new school was not really that. The transition went smoothly because the TA understood how to deal with an autistic child. While his old TAs were both trained in ABA they seemed to have very little understanding as to what went on inside his mind and spent most of their time complaining about his non-compliance, his extremely aggressive behaviour and his unwillingness to do any work for them. There was the occasional flashes where he did cooperate with them briefly to show them he was intelligent, however he was in general uncooperative.

So why exactly was there such a difference, here is a bit of a list of how things are done differently.

1. His IEP was scaled back not from a difficulty level but from the perspective of the amount of things on his IEP.
2. He went from 2 TA’s splitting the day to 1 TA full time with a change for lunch break for main TA
3. His TA does not leave his side, while his previous TA’s talk about being on the other side of the room from him when he decided to lash out, or to run.
4. After half the year there has been 2 or 3 mentions of him being a bit aggressive and trying to hit out, most of which were light hits instead of with force, while last year this was a daily occurrence with extremely high frequency.
5. The old TA sent him home any time he did not make the washroom, his present TA cleans him up and continues the day (last year high frequency, this year low frequency)

Realistically there can be no doubt that the main reason for the drastic change is a combination of how much he likes his new TA and the drastic change in the way he was treated.

A strong comparison can be drawn to the Ayn situation and realistically the solution to properly treating her can be found in changing not only the people working with her but also the way she is treated and the way her work is structured. She needs trained ABA workers but she also needs people who “understand” autism, this means they must understand at least in general terms why she does the things she does and understand that for every positive change that is achieved there will be a set back in another area, perhaps not as pronounced but it will happen. This is the “outlet” that means gives them the ability to deal with the frustration of not being able to communicate and to remove it totally is to allow no means for them to deal with their frustration and this is not an option that works in any way. Most importantly always work with her not against her as she will likely only work to change her behaviours if she feels you are on her side.  Confrontation is not the solution when you are dealing with a child who has minimal ability to communicate their feelings.