Living with Autism: A Parent's Perspective

A major study was done over several years comparing the autism rates amongst women who were living near freeways during pregnancy versus those who were not. 

What this particular study shows is a strong possibility of a link to high levels of air pollution increasing the rates of autism. Again this is another “environmental factor” though this particular study does not look at genetic possibilities as an additional factor other testing makes it likely that genetics as well was a factor.

In comparison to the previous post I made this provides an additional environmental factor to include in addition to illnesses and parasites and in addition to other various environmental factors that have been suggested in the past including pesticides, pet shampoos and toxins from coal burning plants.

My personal conclusion from this as well as various studies that have found differing genetic links to autism is this:

Autism is likely caused by a combination of various genetic mutations working in concert with various illnesses and toxins introduced both during the mothers pregnancy and at various points after birth.

I do not believe we will ever pinpoint a singular cause for “all” autistic individuals and as such believe that it is highly likely that the cures and treatments for autism will stretch across a broad spectrum because of these variations. 

I do not believe any particular “environmental factor” can be completely ruled out until all genetic variations linked to autism are identified and then matching them to possible environmental factors in specific autism cases.

In all i would love to see this study duplicated to back up the results seen here however i do believe the results are relevant to the situation

There was an interesting study result released by Johns Hopkins a couple of weeks ago.  This research was not directly related to autism but instead has tangential interest.

The study focused on mice which had a genetic sequence linked to schizophrenia in humans.  It was basically looking at environmental factors (specifically inducing a virus or parasite type illness)

The results were interesting in the fact that the mice that were introduced to these environmental factors as foetuses had increased anxiety, symptoms of depression, altered social behaviours and weakened stress responses.

basically what this shows is that a single genetic variation believed to cause a specific illness could under environmental factors produce entirely different illnesses.  The researchers intend on also varying the timing of the introduction of the environmental factors to see the effects.

Also should be noted a control group that was not introduced to environmental factors did not develop these symptoms.

This does lead strength to the faction that does believe that environmental factors as well as genetics could be the actual cause of autism rather then just genetics or environmental factors.

I believe further testing would be required and would also expect that this theory will come under extreme fire as does any test linking any form of environmental factor to autism.  Time will tell whether the results of this testing can be replicated by other labs.

“You can’t punish a child who is acting out because of sensory overload.”
by Temple Grandin

Temple Grandin is a great model of what a fully autistic person can achieve and this statement is totally correct. However this statement is also totally wrong.

That dilemma is caused by a multitude of factors and primary amongst those factors is are there other non autistic children in the family and how should that affect how you approach a given situation.

The issue that arises is that if you have a second (or third etc.) child that is not affected by autism or another behavioural disorder you then have to also deal with the fact that you have got to tread a fine line between treating two children differently for the exact same situation and you have to do it in such a way as to not breed resentment with the other children.

This results in having to occasionally discipline an autistic child for behaviours that you would prefer not to discipline them for simply to maintain a level of cohesion between the children. It also means that there are times when you have to step back from disciplining a non autistic child for the same reason.  If you add into the mix an infant that gets laughs for behaviours that would be disciplined in an older child then the balancing act becomes even more restrictive.

Deflection is the best tool when dealing with our autistic child,  however this is something that is difficult to teach a second young child to utilize effectively regardless how helpful they endeavour to be sometimes this is not easily understood and sometimes it is extremely difficult under a given circumstance.

Parents of autistic children who have other non developmentally challenged children have a very fine line to walk in the effort to bring out the best that ALL their children have to offer.  It is a fine line and one that takes lots of practice and lots of patience but the joy of watching your children move beyond their limitations (and yours) makes the effort well worth the time and effort spent.

While many families of Autistic children spend months preparing their children for Christmas we do not have this issue. However our son does have issues when dealing with Christmas activities that do require careful handling.

For instance for many years my mother has on boxing day held a family meal which has grown to include as many as 20+ individuals and our son tends to not eat during these meals as there is just to much stimulus involved to allow him the comfort he requires for his meal. This year due to age and volume of individuals my mother has scaled back her meals to include one child’s family at a time drastically reducing the number of people involved. Interestingly enough our son still chose not to eat so even that did not reduce the stimulus enough to allow him comfort. On a side note even at home for our Christmas dinner he did not eat as well as he normally would so the simple break in routine of how the meal is handled could be enough to upset his equilibrium around the meal.

What was interesting is the presents. For the first year our son actively involved himself in opening his presents (at least up till he reached a toy that took his concentration away and he stopped anything else to play with it) Our son was definitely enjoying his new toys and participated well in the general Christmas activities we normal do like waiting till my parents arrive to open presents and actively participating in the gift opening. He also constantly presented my father with his gifts to be taken out of the box and did try several toys until he found the one we tried to keep to the bottom of the pile (Leapster explorer was a toy we were well aware he was interested in due to his internet activity of late) and he opened all his presents till he got to it.

Interesting different thing that did occur during the day was that about halfway through the day for some reason he seemed to get overstimulated to the point where he was finding it difficult to cope. Rather then strike out (as he is quite capable of doing) he walked off and went upstairs to our room and sat in the dark with the lights off and the blinds down (quietly still playing his game but away from all the bustle of the house) he chose to do this several times during the day leading us to believe that he can be well aware of when he is getting overstimulated and is quite willing to take himself away from the situation when necessary. It will be interesting to see if this behaviour continues through the year.

All in all this was another good Christmas. Our children were extremely happy with their gifts (though our 19mth old believes that her siblings explorers are hers and we may need to introduce them two years early to her) and our family did not incur debt to give them a decent Christmas. While the blog has suffered a bit due to time spent working and shopping to make their Christmas memorable I am able to sufficiently say in the aftermath that it was well worth the effort and we are all pleased with our successes during this busy time of year.

Now I have always personally liked the concept of natural medicine. Especially Eastern medicines that are designed around specific formulations based on individual requirements and body compatibility.

That said I am also sceptical when looking at claims for natural medicines that promise to cure everything from warts to cancer and every other type of illness. The reason in my mind is that if it was that effective would it not be the standard norm of cures. Or would it. Is it possible that the profits of the large pharmaceuticals would so override the humanity of the cures that they would be buried. It is possible and is an interesting perception.

That said when I look at autism and supposed cures I have to look at it with a jaundiced eye as well as a healthy dose of thought and common sense.

Over various researches and testing there have been many different “causes” of autism found. Most involving a small portion of autistic cases but one interesting factor is that if taken at face value it could be said that there are many multiple causes of autism.

While I believe this lends support for the clarification of various forms of autism (similar to perhaps differentiating between different types of cancer) it also leads to the possibility that there could also be various cures that would affect different sectors of the autistic community in different ways.

Take for example the number of parents who have used a gluten free diet with varying forms of success, from no change to improvement in abilities and on to an apparent cure. The same has been found with chelation therapy.

Now there are groups that say if a person is “cured” using this method then they were never actually “autistic” but I am not convinced that is necessarily the case. If it is accurate that there are many differing causes to autism then it should also stand to reason that there could realistically be various forms of cures and that each cause and cure could be correlated.  With varying levels of autism and the clinical diagnoses being based on a set of conditions rather then a testable and provable existence like that found in cancer it is quite possible that these “set of conditions” could be brought on in various different patients in different manners therefore leading to various different cures.

Now I don't have a specific “cure” that I am touting I am simply questioning if the rush to cast doubts on various “cures” or “diagnoses is actually the best use of our time. If any specific cure works for any specific individual then that cure should be lauded. Not as a cure all but as a new possibility that may actually be helpful in a group of individuals that are affected in exactly the same way.

Research is definitely needed to see if this is a possibility and as always I am a strong proponent to more and more research being done to allow our children and our future generations the best possibilities to meet the most of their potential.

Report card time in our house.

This is always looked at with a bit of a jaundiced eye by some autistic parents because not every student is equal and not every teacher looks at them appropriately.

Last year we had trouble with our son’s teacher.  He was diagnosed autistic and had a full time TA as well as a well founded special education plan based on his abilities and needs that would bring him fairly close to inline with his peers.  he was basically nonverbal and yet he was based as needs improvement on communication and while he was capable of reading all of the “sight words” for the next grade level up but she didn’t even bother testing him or consider it worth mentioning to his next years teacher at the end of year conference (fortunately the new teacher had sharp eyes and questioned her on it)

Now I have personal knowledge of how much damage a poor teacher can cause. In grade nine my English teacher chose to refuse to allow me to do a book report on Gene Stratton Porter’s “Freckles” a 19th Century novel calling it to infantile while instead approving Franklin W Dixon’s “Hardy Boys” as a more acceptable level. Now I can only assume he did not bother reading the book (or was unable too as it was written in “Old English”)

This is the same teacher who as my school’s guidance counsellor blocked my original intended course selection, damaging my high school transcript with low end courses (instead of the higher “advanced” courses i had selected) this ended up overturned the next year on almost all courses and the final course was redone as an extra course on my extra year to great success. However it took an extra year of high school to correct the damage he had done to my course selection and I was never able to recover as I lost my scholarship eligibility due to a 4 year high school career. So yes a poor teacher can seriously damage a student’s ability to achieve to the best of their potential.

This year our son’s teacher looked at his SEP as well as his progress and marked him accordingly, marking his progress as it reflected on his SEP and those courses and behaviours that were not covered were marked as applicable at the time.

We were initially concerned about this teacher when we first realized who his first  year teacher would be, however we have been pleasantly shocked by the results that we were given and feel that based on where he started and what he has to deal with on a daily basis that he is being marked fairly.

These reports are kept in his permanent file and so they affect the judgement of every subsequent teacher and TA or support worker who has access to his file in preparation for dealing with him for the year. To have him appropriately marked and his progress accurately measured actually does matter because it gives the next years instructors and TA’s an accurate measure of his ability instead of falsely holding down his progress simply because the teacher may not be interested in understanding his progress or his abilities and limitations.

So to my son’s teacher thank  you for making the effort to actually realize what his limitations are, what his progress is and what his SEP sets as his goals and using this information to accurately measure his progress for the school year so far.

Our son has always had one thing going for him. No matter how much his behaviours got in the way of anything else, come time for AIT testing he was without fail chosen for the testing. The reason was simple, he thrives on the AIT testing environment and so he behaves at the best of his abilities and makes his trainers look the best they can possibly be.

Now last year he entered kindergarten and so the end of ABA therapy. And for the ABA center it was the end of using our son for their testing. But, there was an unseen detail. Because of our son’s ability in testing when the AIT program did their OTJ training our son was chosen as one of the subject’s because of his history with the testing. This was again repeated later in the year, so in kindergarten he had two rounds of AIT training courses.

This year we were called again and asked if he could participate again (we really enjoy him participating as he functions well during it) and again today when the head trainer called me she asked if he could be used in the second training as well.

The advantage that his participation in this course provides is specific ABA based training used in relation to school based activities. In school his TA’s are both ABA trained however full ABA teaching is considered to disruptive to the class and so while he gets elements of it, he does not get the full benefit. During the AIT training he is still working on the school  programs but it is for this period being done using full ABA methods and his responses are significantly greater.

We willingly allow him to participate in this program because he functions so well and benefits so much from it. however one question I often ask myself. Which is more disruptive Using ABA in the classroom or having his behaviours in the classroom.

His behaviours are not completely removed by ABA but they are dramatically reduced.  Sometimes I quietly question (in my head) whether it would be more productive  to use the ABA in the classroom, both for him and for his classmates.

His classmates are another thing. We are fortunate that he is only in Grade 1 at the moment. But I am so pleasantly surprised by the friendly way he is treated by his classmates (and others not in his class) even though he is non verbal and generally unresponsive to their attention. But everyday when I pick him up someone is always waving and saying hi to him or someone is waiting for him to play with him even though he generally accepts but also ignores their presence.

Sometimes it makes you feel that regardless of what commenting you read on news pages when it comes to some adults opinions of special needs students and integration, apparently bigotry and hatred are not genetic because almost all the kids i have seen in my child’s school have missed that “message” and are extremely well behaved not only with my child but with most other children there as well from what I have seen.

We want answers. Not platitudes, not excuses and most certainly not condescension because while we may not understand science as well as the researchers, we understand autism far better then the researchers. We understand autism so well because we live with it on a daily basis. So if you tell us certain things are not relevant, we can say yes it is, we say this because we can point to our children and say look, here, this one and that one also have to deal with these specific issues. Changing the criteria to include more and more different groups does muddy the waters, and while I don’t deny the right of those newly included, it does make the research more difficult because it minimizes issues, like cognitive difficulties that used to affect a large portion of the autistic group and now in the upcoming version of the DSM it does not even appear to be recognized as part of the autistic issues.

We need to perhaps look at it slightly differently. 20 years ago autism was recognized by the rocking and almost total exclusion of any social type of activity, the exception being for some classed as savants or extremely high functioning (Rainman and Einstein types). Now my son is towards the more extreme range though he could functions on a physical and interaction level the way savants are portrayed, though we have nothing by which to measure his potential to fit into the savant category at this point. Today autistics are more commonly thought of as those like Ari Ne’eman  or on the more aggressive side with regular tantrums or meltdowns. Those with cognitive difficulties and true savants are an ignored sections of the autism spectrum. The result in this is that searching for various causes of autism are focusing more on those in the newer categories (as are treatments and care options) with little or no research and treatment being done on the other end of the spectrum.

As parent’s we have all become activists. We are constantly working within the school system (whether cooperatively or antagonistically) to get the best care and education possible for our children. This activism is carried over into the research area, where many parents are calling for specific types of research to look into common theories (whether valid or invalid) to come up with some answers. The issue becomes that at 1 in 110 children born presently being expected to develop some level of autism and the appearing to be rising regularly more and more parents are getting involved and the more that get involved and the more that start looking for answers our requests are going to get difficult to ignore.

Researchers need to involve parents in the research process because as the stakeholders of all autism research we are the ones who need to be convinced that any given results of any given research is the best possible answer. Without working with parents you will find that the noise calling for more and better testing (and calling for certain types of testing) will not go away but just get constantly louder.

I know researchers may not be comfortable involving those who are not scientists in the research but this is the best way to get the message and the resultant answers to those who are most concerned with the research.