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.

I have been having discussions the last few days on a blog regarding Vaccines and the question of an Autism link.

Now of course I was fairly constantly defending against hard-core anti link posters however there was one point I was consistently trying to make and it keeps getting missed.(or ignored)

To eliminate (or prove) a link between autism and vaccines there needs to be a comprehensive study. This study also could be co-linked with a study looking to find links to genetic causes of autism.

To accomplish both in a linked study would require:

• 1000 children to be vaccinate on regular schedule
• 1000 children to be unvaccinated
• testing to be done every six months as well as a week before and after each vaccination
• testing at vaccination period to include video monitoring and complete reaction check
• general testing as well as vaccination period to include
• DNA Profile (compared to personal profiles as well as compared for similarities to all other testers)
• MRI
• CT scan
• Complete blood work up
• additional testing could be added to search for additional links
• different classifications of autism could potentially each be looked at individually as well as part of the overall group picture
• testing into second and third generation unvaccinated would perhaps be helpful to allow possibility of build-up in bodies transferred through generations

As a parent of an autistic child what is of utmost importance to me is not that the results confirm my beliefs but that the underlying cause of autism be found. Once a cause is found then it is possible to work towards curing or at least removing/reducing the cause of autism to allow all children the same opportunities as all other children

Now regarding the Amish stories (do/don’t vaccinate, have/haven’t got autism) I am basically seeing two stories one on each side and neither one is very long on data both relating mostly to basic observations so I will not pass judgement either way at this time (though neither in my mind can be said to be successfully refuted)

While some people question the ethics of running a double blind test with and in basics the ethics of not vaccinating I also have to add there is also what about the question of ethics in not doing these tests and potentially consigning an increasing number of children to diseases we could avoid with a reformulation of these vaccines once a full proper test was conducted and the results properly examined

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the following is a direct copy of an article printed in on the website  http://www.vaccinationcouncil.org on June 2 2009

the other date is the date the the reporter originally filed the article.

Joseph Mercola, DO

May 4, 2005

Autism is a difficult disorder to miss, as it is characterized by noticeably abnormal or impaired development in social interaction and communication and a markedly restricted array of activities and interests. And while scientific consensus claims autism has been around for millennia at generally the same prevalence, that prevalence is now considered to be one in every 166 children born in the United States.

Therefore, with this devastating statistic in mind, one reporter set out to analyze the autism rates among Amish communities. Why? Because perhaps searching for autistic Amish children would reveal clues to the cause of autism … and it did.

The Clues Come Together

Since they have been cut off for hundreds of years from American culture and scientific progress, the Amish may have had less exposure to some new factor triggering autism in the rest of population. The likely culprit: vaccines.

Traveling to the heart of Pennsylvania Dutch country in search of autistic Amish children, the reporter, based on national statistics, should have found as many as 200 children with autism in the community — instead, he found only three, the oldest age 9 or 10:

• The first autistic Amish child was a girl who had been brought over from China, adopted by one family only to be given up after becoming overwhelmed by her autism, and then re-adopted by an Amish Mennonite family. (China, India and Indonesia are among countries moving fast to mass-vaccination programs.)
• The second autistic Amish child definitely had received a vaccination and developed autism shortly thereafter.
• The reporter was unable to determine the vaccination status of the third child.

Dangerous Effects of Thimerosal

In some vaccines, they use a mercury-based preservative called thimerosal that keeps multiple-dose vials from becoming contaminated by repeated needle sticks. After health officials became concerned about the amount of mercury infants and children were receiving through thimerosal-tainted vaccines, the toxin was phased out of U.S. vaccines starting in 1999.

However, due to mislabelling and other problems, its presence is still being felt, and more and more children are suffering because of it.

Does anyone out there really need more evidence than this?

Admittedly, this was not a placebo-controlled scientific trial but an evidence-based fact analysis that, in my mind, provides an irrefutable link to a lifestyle and, most likely, mercury-containing vaccine connection to autism.

Folks, you don’t have to be a medical doctor, hold advanced epidemiology degrees or teach molecular genetics to figure this one out. You don’t even need a degree in rocket science. How much more obvious could it be?

The link between autism and vaccines is certainly not a new idea. In fact, suggestions of this link have been in the national news for at least six years now. Just last year a study, that reviewed data from the Centers for Disease Control and Prevention’s (CDC) Vaccine Data Link, concluded that children who receive thimerosal-containing vaccinations are 27 times more likely to develop autism than children who do not.

That’s a 2,700 percent increase. The numbers just don’t lie.

Considering how important this issue is for nearly everyone you know, it might be a good one to forward to your friends and relatives. You can easily do this by using the E-mail to a friend button in the upper right hand section of this page, just under the search box. You can make a larger impact if you write them a personal message in the e-mail as to why they should seriously consider the advice — and why they may want to subscribe to the newsletter.

This most recent investigation simply provides the proverbial icing on the cake. There aren’t too many other places, if any, in America where you can find large groups of children who haven’t been vaccinated.

The reporter found three children with autism. One child was adopted and previously vaccinated, another was one of the few Amish children who were vaccinated, and the third had an unclear vaccine history. That leaves, at most, potentially one child out of an expected 200 (from national statistics) with autism. The odds of this being mere coincidence are slim to none.

At Least Change the Rules Concerning the Hepatitis B Vaccine

Because of their religious beliefs, the Amish community chooses not to give their children any vaccines. Understandably, many of you may not choose such a radical approach. However, if you were to focus on just one vaccine, I would encourage you to look at the issues surrounding the hepatitis B vaccine.

The multi-dose version of this vaccine, which is typically administered to newborns before they leave the hospital, still contains thimerosal. This is reprehensible, irresponsible negligence of the highest magnitude. The immature central nervous systems of these helpless newborns are particularly susceptible to toxic insults, and thimerosal, the mercury-containing preservative used in these vaccines, is one of the worst.

It would be much easier to understand if the hepatitis B vaccine had some value, but most natural health experts who study this are convinced that this is nearly always an absolutely unnecessary vaccine.

There are only about 5,000 people a year who develop the most serious consequence of hepatitis B infection, liver cancer. That means we are immunizing tens of millions of infants and causing brain injury that has caused an epidemic of autism to protect liver cancer in 5,000 adults. And, many of these adults have serious social problems like IV drug abuse, alcoholism and poor nutrition that seriously increases their risk for this disease.

Action is presently being taken in the US to attempt to have a new designation put in place on an alert system.

Unlike an Amber alert which is used in kidnapping cases where it is believed that the child is in imminent danger, Mason’s Alert is aimed at having public looking for a child who has wandered away.

The issue with autistics wandering away is extreme. The reason is that 92% of autism cases are believed to be prone to wandering and the major issue being that Autistics generally do not feel the same dangers that normal children would feel.

In our case, our child has wandered in the past, our child unlocked the door and walked out in bare feet playing a handheld video game. He wandered down a gravel driveway, across a street down three blocks to a major street and was picked up by a passer-by wandering down the yellow line. The passer-by called the police just as my wife was calling the police and we picked him up a few minutes later. However at 6 years old non verbal and without fear we spent a frantic 15 minutes searching the house and neighbourhood before calling the police and yes we were freaking. But we got lucky. In many cases these children are not always so lucky. Many autistics are attracted to water and most show very little fear. A large number of autistic children have been pulled from neighbouring lakes and swimming pools and in some cases police were slow to respond because the child had wandered and was considered likely to return on their own. With autistics this is never a guarantee and not a chance we can take.

Canada also needs to look into a Mason’s alert system that would quickly and instantly broadcast details of a wandering autistic child. We need to protect them because so often many of them cannot protect themselves.

I am going to place a link here to Mason’s Alert but please follow this link with caution what you will see there will break your heart as it is not filled with feel good stories but a list of those who have wandered away with drastic consequences. You will quickly understand why a system like this is needed for those who do not fall under the Amber Alert program criteria

What you see here may surprise you. The links are there and some medical people in high places can see it.

Now under no circumstances do I suggest that the standard regime vaccines should not be given to your child.

Our youngest has not had hers yet but we fully intend on her getting her full regime of standard vaccinations.

However here is the key issue. This time when our daughter is vaccinated we will be taking a fully intensive video registry of her behaviours over a month or two period before, during and a month or two after the vaccinations.

While I am not absolutely positive that our daughter will develop autism I am also not going to take the chance. I am going to document her history and behaviours and if there is an issue that develops we are going to have the video record.

Also as point of fact to back away from having it buried in the 18th month debate we will be going later then that for the MMR vaccine to eliminate possible time confusions.

I do believe that Vaccines do trigger autism. Whether the underlying issue is a mitochondrial issue or is something else entirely there is a definitive trigger. While we need to find the underlying issue we also need to find the trigger and until we do it is my personal recommendation that every parent who can do a seriously intensive video record of your child’s behaviour up to during and after vaccination because if we are going to get the message out there we must do it through solid documented proof.

This is the first step to document and prove that the timeline does parallel the vaccination schedule.

Part two will be getting Government to actually fund proper testing to find the real trigger and the real cause regardless of the pharmaceutical lobby’s self centered profit driven interest in keeping this information buried in the darkest recesses of the most hidden place they can find.

Well while I am a strong supporter of Autism having an environmental trigger, I do accept it is likely that there must be something to differentiate autistics from non autistics or such a trigger is unlikely to work.

So it is with some hope i saw there was new research that indicated that a missing chromosome was a clear indicator of autism or schizophrenia (well ok I was sceptical and concerned to see autism lumped with schizophrenia but we will see)

Then I started to look at the total numbers

over a total of two different databases

23271 people in a database of intellectual disabilities and autism and schizophrenia

total 24 of those people are missing chromosome 17
0.00103% of those on that database or assuming at a stretch that all were autistic (they weren’t) then 0.00103% of those with autism were missing chromosome 17

47595 healthy people were tested and none were missing chromosome 17

however of those 24 confirmed missing chromosome 17

8 were confirmed autism

4 confirmed schizophrenia

9 completely untracked

leaving 3 that were other cognitive delays also missing chromosome 17

I used the full 24 being autistic to give the researchers the best possible conclusion and still came up with 1 in 1000 autistics missing chromosome 17

so while yes it is highly likely that if someone is missing chromosome 17 they will be have either autism or schizophrenia or some other developmental delay there is to low a number within the autism grouping to consider it any form of viable measure of whether or not someone will get autism.

In actual fact having that chromosome missing says yes you will likely be in this grouping

but actually having the chromosome present does by no means indicate that you will not

I originally went to write this article looking at the “case” against Dr. Wakefield and the amusement I feel when the haters come out shouting down his theory.

Then I went looking at an interesting  article and realized that this issue was actually far broader then just the reaction to Dr. Wakefield and so I decided to include a second doctor,  Dr. De Soto.

What I have found when people attack these doctors work is that they don’t actually attack the important parts of the work. What they do is attack small issues within the work, or in the case of Dr. Wakefield certain collection methods that were of questionable ethics and use these details to call the entire study suspect when in fact they did nothing to detract from the main body of work.

Using Wakefield as the prime example, several things were done to discredit him. First they attacked the fact that he collected blood at a child’s party without the parents consent. Then they attacked the fact that he was not qualified to do this type of study. Then they attacked the size of his “study group”

The problem with these attacks are that they do not actually address his work. The closest they come is the fact that the size of his study group is small enough to potentially skew data. ok that is fact but the simple truth is that the results say that we now have to look at this study (replicate it better with a standard group size and look for potential truths)

De Soto’s issue arose from the fact that she found error’s in a piece of work that indicated there was no correlation between mercury and autism. She as base fact says that it is something that needs to be studied based on evidence but says there is not sufficient evidence to either prove or disprove it. The attacks she suffers are aimed at her personal life, her qualifications and even completely ignoring what she wrote and saying something different entirely. And all attacks unproven but being used as a method to damage her credibility (even though top journals listed her refute of the original study as extremely important and accurate.)

What is basically proven by these attacks are the simple fact that there is little base room to attack the actual body of work presented by these individuals or others looking into mercury/autism links and so every attack is done on the periphery in an attempt to discredit them to such a point that their work is ignored.

What this proves to me is that we now need to do a very large very comprehensive study across numerous generations (3 to 4 minimum I suspect) to look at the effects of environmental issues of all sorts on autism and also looking at the possibility that generations of build up could therefore take generations to reduce.

These tests need to be done to systematically prove or disprove the environmental factors aspect of the onset of autism for a definitive response so that we can move on to fixing the problem and getting decent therapies for those who have not had a chance at these and other potential new therapies as of yet.

There is a story barely reported of a UK man (Gary McKinnon) who is being charged in the US with computer crimes due to hacking into the NASA and DOD computer systems.

Gary McKinnon is a 39 yr. old man with Asperger’s  who is facing 60 years in jail because he wanted to know for sure if the US had found aliens and were hiding the fact. While it is interesting that he does not deny having found anything of the sort, this would actually come as no surprise to the large portion of the population anyway.

What seems to be at issue is that Mr. McKinnon got in and out of the computers pretty much at will and searched through large volumes of “restricted material” including looking for answers to questions surrounding the 9-11 attacks and the fact that he is quite forthright in his statements that it appears that the US had fully functioning anti-gravity devices (something that would negate oil as a major energy source).

Now in almost all past hack attacks at the pentagon, NASA and DOD, the perpetrators were almost always offered a major computer contract and all concepts that there may have been any breaches in security were buried. Now this leads to a few questions. Did Mr. McKinnon get into details and areas that previous hackers were not able to reach? Is his age and ASD affecting the Government’s urge to overkill the issue rather then hire him? Is the fact that Mr. McKinnon believes that some of these details belong in the public domain a major factor in attempting to bury his findings?

ASD or in this case the branch of ASD that includes Asperger’s includes aspects that makes even charging him with these crimes rather ludicrous let alone the fact that they are attempting to attach as much as 60 yrs. or the remainder of his natural life in prison.

Now lets look at this from a realistic standpoint they are looking at putting an autistic person in prison for the rest of his natural life for HACKING this is so stupid as to be laughable, except this is the same country that less then a year ago executed an autistic person so we already know that they have no understanding of autism and care only for making themselves look good at the expense of anyone who is different.

While I have had high hopes for Obama, I am rather quickly losing any hope that he is anything other then just as far an extreme right winger as any Republican to hold office. This case could and should have been terminated by his office soon after he was elected.

I would call specifically on Obama and Cameron to terminate this assault on the Autism Spectrum and if they refuse i Call on Prime Minister Harper to offer Mr. McKinnon political asylum and on Mr. Ban Ki Moon to suggest sanctions against these two countries for the atrocity they are attempting to perpetuate.

Repeatedly for years now we have been saying: When are we going to research environmental issues in relation to possible causes of Autism?

Now we here that a conference was set up and those researchers involved with any details on autism and the environment were not invited. Instead those invited were not even autism researchers at all but were involved in researching other diseases.

This is leading me to a central question. Are we as parents and stakeholders in our children’s health and welfare going to have to set up the research studies and trials ourselves.

This is not something that is to be taken lightly as any studies we do or commission will be guaranteed to be second guessed however with the right ethical researchers and a completely above board ethical team we could do the research if we could pull together the funds for the research ourselves.

This is something that we are going to have to look at sooner or later and given the history of those presently commissioning the various research paths we might as well prepare to do this sooner because history is showing us that we are the only ones who actually care about this form of research

In my personal opinion i believe that the research that we need to look at involves a direct question of is there any environmental trigger to autism and if so what is it? and research into the various “unproven treatments” to provide parents with factual information about the validity and successes or lack of successes that each of these treatments provide

Apparently in the states there exists an interesting myth that celebrity parents and bloggers denouncing vaccinations are hurting the vaccination rates amongst the wealthier parents.

This myth is even being spread as fact by the NCQA (National Committee for Quality Assurance) and TIME magazine.

What really makes me laugh about all this is the target audience suggested by these groups. They are suggesting that while wealthier individuals are decreasing the vaccination rates amongst their children those in the poorer groups are actually increasing their vaccination rates.

Now what amuses me is this when celebrity gossip magazines create articles they specifically (and successfully)target a group of individuals that are likely to be highly susceptible to celebrity influence. That target group is not the wealthiest individuals but instead the poorer, less educated masses.

For the NCQA and TIME to suggest that vaccination rates amongst wealthier individuals is declining simply because of celebrity parents and celebrity bloggers is missing the message that these lower vaccination rates are sending.

Those in the wealthier groups across both Canada and the US are largely likely to be far higher educated then those amongst the poorer groups and so unsubstantiated theories are far less likely to be quickly swallowed up by the wealthier groups then they would by the poorer groups. The simple fact that vaccination rates are decreasing amongst the wealthier groups is indicative of the fact that perhaps some of these parents are looking a lot closer at the relationships between the various vaccinations and autism as well as perhaps looking at the success rate of vaccinations (lower then what the health departments would like people to believe)

The likely reason why the vaccination rate is so high amongst those in the poorer groups is that those who are poorer and usually less educated are far more susceptible to the bullying nature of the health departments and pharmaceutical giants who are swearing blind it is all perfectly safe and extremely effective and that you are a horrible parent if you don’t vaccinate. This type of approach works far less effectively on wealthier parents as the threat of child services being brought in if you don’t vaccinate and other strong arm tactics are far less successful due to the abilities of these families to hire successful lawyers to deal with this type of abuse.

I would go as far as to suggest that the likely reason why wealthier parents are reducing the vaccination rates are two-fold. One they are realizing that coincidence does not happen at the rate of 1% and two that the success rate of vaccinations are lower then what they are being told and they are starting to question why they should be spending their money on something that they are starting to consider less effective then promised and with more risk then suggested.

While I personally vaccinate on most major illnesses, I am way less likely to waste my time vaccinate on things that are not that effective and frivolous to the extreme (flu shots and the like)

I do understand the elderly and those in serious at risk categories getting these shots but for those of normally healthy lifestyles I believe it is both a waste of time and extremely ineffective.

In my most recent post I was discussing different styles of autism and how the actions of one affects the other.

I guess while i have always realized that there were two sides to the autism corner, I never realized just how distinct they were till yesterday.

During the lead up to and through the “Shut Down for Autism” there was also a second group pushing to “Speak Up for Autism” On the one hand you were learning what it was like to be “disconnected” like those with autism and on the other you were “Speaking up” for those who could not speak up for themselves.

While watching twitter in the lead in to the Shut Down it was obvious to see who was on what side, but it was also obvious as to why each was choosing that side. Those who connected most with (or were themselves) high functioning autistics chose the Shut down. Those that were parents of low functioning autistics generally took the Speak up role.

The energies in both of these groups is incredible but many times it works at cross purposes. The issue being that those who are high functioning are saying look at me I can do almost everything you can do and sometimes I can even do it better. The low functioning group is saying look at my child. I will be happy if he can simply learn to show some emotions but I will be ecstatic if he can say “I love you” and kiss me good night.

While I understand and agree with those who are high functioning wanting acceptance as they are, I also see the need to help remove the causes of Autism from the world because those who are on the low functioning end are increasing in numbers drastically and daily and we as a world will not be able to sustain their care if we do not start to work to eradicate the overall causes of this mental illness or disease.

We as a combined group must work to get both messages out. And we must work to show that they are not a contradiction in terms. Autism is such a large spectrum with so many different types of autism and we must learn that all those diagnosed with autism have autism but each of those diagnosed with autism have unique needs to that person as an individual and we must work to make sure that each of those needs are met at least until we have the ability to cure the disease

The major issue with having an autism diagnosis is that there is a belief amongst many that this classification pigeon holes the individual into a little tiny niche where now all is understood. Wrong

The present classification for Autism is so broad that an Autism diagnosis can actually limit your potential because most people can no longer point to any single issue that exemplifies autism.

Autistic Individuals are now either high functioning or low functioning, they are either socially adept or they are not etc. but even this is not realistically the case. Amongst autistic individuals instead of taking a string and saying you are here on the scale you realistically take a cube and point to a single space inside that cube and say this is where you exist on the scale. What it means is that instead of a single point of reference there is many including behavioural, social, verbal, intelligence and even more.

Most people want to pigeon hole autistics similar into a single type and because there are a few high functioning individuals who have achieved good positions they are considered to be the “normal” amongst autistics (the belief being that all autistics therefore can achieve these positions or functionalities) when the reality is these are the exceptions (the rare few who are impact slightly by their autism but still able to hold a solid decent paying position and function fairly close to human normal to the human perception).

The reality is that the vast majority of autistic individuals will be at best able to function with assisted care at best and more likely will live with their parents till the parents die of old age, simply because they could never function properly on their own. What is to become of these autistic individuals when their parent dies? Most people never think that far as to realize that there is absolutely no programs in place to handle these individuals when the time comes. And more then that most people do not realize that they can not simply be plugged into a siblings life and care because the requirements for their care is likely beyond the capabilities of those siblings to adjust to.

Remember most parents of autistic children have made adjustments to their lives since their children were in their infancy. There are programs to involve them in while they are still pre school and the school system has programs till they graduate (depending on your jurisdiction) and many parents make extreme sacrifices in their careers for the rest of their lives to be able to care for their children, and to ask a sibling to take on these sacrifices is extremely difficult because their lives are not adjusted in that direction already.

Add to this that depending on their place in the spectrum there is likely to be some level of behavioural issues including violence and you have a situation where it is likely that when reaching middle age an autistic individual will have little options in places to go and like many others with other mental deficiencies in today’s society they are likely to end up on the street or in trouble with the law simply because there are no options in place and no planning in place to help them adjust to life past the point their parents can care for them.

While i would never trade my son for a “normal” child as i find him an absolute joy at the same time i feel it is incumbent on me to extend my life to the longest possible simply because i fear for what life will hold for him once I have gone.

An autistic child can be at the same time the greatest joy and the greatest worry in any individual parents life.

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.

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first diagnosed as autistic in 1943 he is the initial confirmed diagnosis in North America

Autism
Autism is a debilitating mental disease with a few disturbing trends.
1/ it’s cause is found to be 2% genetic.
2/ the remaining 98% is unknown but believed to be environmental
3/ there is no known cure but there is treatment that can make the disease manageable in most
4/ those with autism can live a full normal lifespan
5/ one in 100 children born have autism the large percentage of that boys
6/ in the last 20 years autism cases have increased by over 60%
It can be treated and those who suffer it can live as long as a normal person.
This means that if someone has the disease and is not treated they can require constant care 24/hrs a day for as much as 70-80 years. This care would require a person trained to deal specifically with autistic patients and each carer can only deal with one person at any one time.
With treatment many of these individuals can lead lives that are close to normal and in some cases can be extremely productive. Two examples of extremely productive Autistic individuals are Albert Einstein and Temple Grandin (an animal treatment expert and public speaker). It is also believed that many comedians are either autistic or ADHD though one of the best examples who I believe is closest to autism  is Adam Sandler.
So with treatment we know they can be productive and in some cases extremely productive. And yet almost all governments prefer to ignore these individuals and their disease with very few providing sufficient resources to properly treat this disease.
Treatment of Autism is done through a program called ABA therapy. A one on one behavioural therapy that in some cases can result in those treated being able to function almost fully in society.
PANB recommends
1/ All autistic children have access to 4 hours a day of ABA training through to kindergarten.
2/ All autistic children have access to 1-2 hours a day of ABA training through all school years until graduation either from high school or university as part of their standard school day.
3/ All autistic children should be taught in school using ABA methods by ABA trained TA’s as this is proven to improve their learning ability
4/ The creation of both an Adult care facility and a Youth care facility be built in Fredericton in conjunction with the Stan Cassidy Center which will care for those Autistic individuals who can no longer be cared for by the normal caregivers of these individuals. This care should focus on multiple facets but should include ABA training to create the possibility that even adults could potentially be helped by ABA be given that opportunity.
5/ All autistic individuals even after graduation should have access to ABA training for short term or long term if there ability to function properly in society diminishes or disappears for any reason.
6/ An attempt to find a further cure and treatment options should be continued through partnership with the Universities in this province, The Stan Cassidy centre and the Federal government
7/ As it has been determined by various parents of autistic children that not in all situations does full integration work with ALL autistic children, A program should be put in place that would allow parents and resource workers as well as TA’s to work together to create a modified part time integrated program that would better meet the needs of the individual student if the situation warrants this.
8/ changes to the disability benefit to allow staggering levels of benefit that recognizes the level of care required as well as the requirements to replace property increasingly due to high increase in breakage due to rocking behaviours etc common amongst autistic children.
9/ Summer autism camps during school breaks should be made available to allow children the ability to socialize with those like themselves amongst trained carers.
It should be realized that both the Liberals and Conservatives were made aware as far back as 2005 of the necessity of a Care Facility in this province when it was made public during the Conservative  years of that time that we were being forced to send those individuals with autism that required long term care to Maine to be housed there as we had no facilities in this province. The conservatives of the time had no interest in developing a treatment center.
During this period the Liberals were vocal in their disapproval of the fact our citizens were being cared for out of country due to no facilities in this province however their dedication to this file was shown during the recent 4 years when no attempt at creating a long term care facility was done regardless of repeated requests.
John Foran was aware of a case in 2005 where a youth was housed at the Miramichi Youth Centre under the direct care of 2 carers from a private company at the cost of 700$ a day because we did not have the facilities in this province to properly house him and from there he was transferred to Maine because the Conservatives would not address this lack of facility.
And yet during the entire 4 year mandate of the liberals not one thing was done to change this lack of care centres either.
PANB is the only party that will push for a drastic improvement to how these autistic individuals in our care are treated.

Normally when our son is as quiet and as well behaved as we found him to be yesterday our first reaction is to haul out a thermometer “ he must be sick”

This does not really mean that we consider him poorly behaved but he is extremely active and high strung.  He runs around everywhere usually giggling and screaming interspersed with quiet moments playing the computer but even then he is louder then most children his age.

What yesterday involved was surprising. We took them early to the park at about 9 where we let the kids feed the ducks and then while the other two were playing with their mother I followed our son around the park. This of course is a necessity as our son is a high flight risk. On any normal trip to the park our time there is determined by how long before he decides he is going to attempt to run. Until yesterday there had never been a break in that pattern for at least a year. Yesterday we finally left when he started visibly tiring, with no attempt to run.

The remainder of the day at home he spent reading books or playing on the computer with little to no bouncing off the walls, another thing he does on a daily basis. He was for all intents and purposes an extremely well behaved boy for the entire day. He would have been considered well behaved for the day even without the normal autism behaviours. The fact his two sisters made every attempt to both in volume and in activity make up for his lack during the day almost like they did not understand the concept of a house being as quiet as it would have been otherwise.

Now to be expected the behaviour did not really continue into today by any means though as he was almost as wild as normal. There was one interesting bit of behaviour though when as soon as we got into the house this morning the first thing he did was to pick up his sister’s beach ball and start playing with it. This is something he has not done before, even though he has one of his own he never used either one for the entire summer until today.

This video by Temple Grandin that my wife found today has an excellent message for those trying to understand some of the challenges facing autistic children and their caregivers

I have a son named Connor
he’s not like you and me
when he was born he changed our life
in ways we couldn’t see

In his crib we hung up mobiles
he loved to watch them spin
but his cows never quite “jumped the moon”
as we sat and wondered when:

He would not communicate, or talk to us
we looked for any sign
but he didn’t progress in a “normal” way
he was “locked” inside his mind

And so began the visits
to the hospitals, and such
but when they came back they always said
“we can’t do very much”

So, special diets
and therapy we tried
to help our son in every way
as we sometimes sat and cried

He had no sense of danger,
could not tell right from wrong
he could not be left alone at all
we would watch him all day long

He would climb on tables and TV’s
would stand and reach from chairs
he was more adept at mountain skills
than he was on normal stairs

And if left alone in a yard or lot
he would just begin to go
there was nothing that would stop him
and he didn’t even know

Where he wanted to end up
it mattered not one bit
because hours and days could pass on end
before he chose to sit

He is now at a school
which is a very special place
where there are angelic saints who teach him
with care and gentle grace

Connor knows what he is saying,
he communicates by sign
he makes you understand him
it just takes a little time

We communicate by touching
there’s some things which give him calm
like running thread along his leg
or by massaging his little palm

He can’t play sports or army
and scouts and bikes won’t do
but there’s another world for kids like connor
that these people take them to

Its a place that lets them know
that they have ability and right
to participate in all we do
regardless of their plight

And while its hard on families
to care for kids like this
Connor has released me,
and has shown me what I missed

With my other kids I’d focus
on achievement and on grades
on pushing hard, cause it takes so much
to succeed in things these days

But Connor's goals are not the same
as they are for me and you
to watch him simply laugh and smile
he’s as happy as he can be

I go with him into his world
away from all the “stuff”
from the things that drive us crazy
which really is all fluff

He smiles and say's “I love you”
his way of saying thanks
“for doing this little thing with me”
he knows how much it takes

I think he knows more than he says
or can communicate to me
but if he wasn’t born this way
there’s a place I’d never see.

As parents of disabled kids
though hard beyond belief
they have a way of taking back
a small part of that grief

And God or nature works this way
by allowing us to deal
by finding something, however small
in a way to make us feel

That our efforts are not all in vain
that there really is a plan
that teaches us all to learn
“accept me as I am”

Though immune from all the problems
that most of us do face
he doesn’t care, he brings me there
to his special little place.

Well after a decent summer it is time for our son to get ready for school again as in only two more weeks he will be back doing his normal school routine.

We are due to meet with his TA’s and teacher before the school year though we have not been told yet when that meeting will be. One thing that has become evident over the summer is that it is highly likely that the school may need to do a new baseline to be able to move him forward.

The issues are depending on the situation good and bad. On the good he has become more verbal (with prompting or even occasionally when he thinks no one is paying attention) and he has become more adept with using computer tools. It also is appearing that his literacy skills are good though we are not absolutely certain just how good they really are, we are uncertain if he is attempting to read my books which are well above what I would consider normal for a 17 or 18 year old let alone a 6 year old, we know he is looking at them and as they have no pictures we question just how much of them he might understand.

We are on the bad side finding that on occasion his temper can get more extreme then we are used to originally, now the school had more difficulties with his behaviour then we did and we are uncertain if this is a release that he is no longer getting at school and so we get the behaviours. This said we still are finding he is showing no interest in hitting at his baby sister though his older sister he considers fair game.

Back to the plus side in the course of family activities this year we have taken him on rides this year that we had difficulties with in the past and found that he is quite willing to enjoy the ride this year rather then try to get out of the car or off the ride while it was in motion. It is worth mentioning that in activities this summer he is actually participating far more then ever before which is another sign of progress.

All in all i would say we are looking at a summer with some good progress and some setbacks but that overall it was a positive summer for him. The hope is as the school year gets closer and starts that he will actually continue to make progress. The reality we will see as the year progresses. For now we have the last couple of weeks of summer and a child who is behaving better then expected in some areas and that is a great thing.