Living with Autism: A Parent's Perspective

Ari Ne'eman Says No to "Wandering" designation

Once again an “autistic” adult who fully functions in adult life has weighed in on a situation that, if he is succeeds, would negatively impact the lives of low functioning autistics all over North America.

The CDC has finally in it’s all encompassing intelligence finally decided that a wandering designation should be used to help identify those children with a propensity to wander away from safe surroundings.  This is something that has been necessary for decades and is part of the reason for an organization called Mason Allen Medlam Foundation for Autism Safety and their program called "Mason’s Alert" that I discussed in November This Program which realizes that autistic children wander, and that wandering autistic children head for water, aims to create an alert system that would have police properly direct their attention in the case of a missing autistic individual, instead of following normal search protocols that do not work for autistic children.

The wandering designation makes it more likely that an alert system of this form could be created, by showing a clinical definition that would make this change in searches easier to accomplish. Lack of this designation helps support police’s attempts to stick to a standard definition search.

What really is annoying with those like Ari Ne’eman that work so hard to destroy the work that we do to get programs and systems in place to protect our children is that he is really no different then me. When i was younger (and using today’s standards) it would have been no difficulty for me to be classed as mildly autistic, though i generally don’t suffer any of the issues of this designation today. What this means is that someone who is fully capable of leading a full and productive life is speaking out against programs and designations that are desperately needed for those with the same disorder but many magnitudes worse.

Once again we are going to have to hope and work to make sure that Obama’s chosen autistic representative does not damage the great works that are being accomplished in setting new standards that help protect autistic children from being natural victims to the world around them.

While we still need to have the issue clarified for certainty, rumour is suggesting  that the new CUPE 2745 collective agreement for TA’s forgoes the needs of the child in favour of protecting the seniority of the TA’s

What all parents of special needs children need to do is to verify that the TA who will be assigned to their child is a TA is who trained to suit the needs of the child. The next step if this is not the case is to request that a properly trained TA be made available.

If we as parents of special needs children are ignored in this way then the parents of special needs children need to start to remove their children en mass from the the schools in New Brunswick until such time as the union, the province and the school districts realize that properly trained TA’s are the required norm for this province. If senior TA’s are not properly trained then they should be paid to return to school to get the proper training.

If we as parents pull all the special needs students out of the classroom there will be no more students for the TA’s to assist with. If there is no more students for the TA’s to assist with then there will be no jobs for them.

And no Sandy Harding this deal is not about “You” it is “About the Children” contrary to statements that have been attributed to you during the negotiations

Autistic Black Man Sits waits for a library to open and ends up spending 10 years in Jail 

An Autistic Black Man who went to the library to early and sits on the grass to wait for it to open ends up with someone calling 911 reporting a Black Man with a gun. Because the officer who arrives to talk to him misjudges the situation so badly, The Autistic individual is instead looking at a 10 year jail sentence for assaulting a police officer.

The officer involved does have a 33 year old mentally handicapped child however he still managed to miss the signs of autism so badly that he ended up manhandling the Autistic to the point where the officer ended up injured when the autistic individual responded as any parent of an autistic will tell you is likely to happen in this situation.

I have two problems with this. 1/ The individual had 911 called while he was sitting on the grass reading a book waiting for a library to open. This was nothing more then pure and simple racism. That was continued by the officer who arrived and without properly assessing the situation reacted as if this was the case.

2/ The officer involved even though he had a disabled child of his own, was so out of touch with autism that he misjudged the situation so badly that without evidence of wrong doing, he manhandled an autistic which any autistic parent is going to tell you is going to end only one way. With a physical confrontation.

We need both in Canada and the US (and likely Internationally as well) for all police officers to be trained in the proper methods of dealing with mentally ill individuals (including autism). While we repeatedly here that police officers are not physiologists' and psychiatrists we really need them to become those. This is because the institutions that would house those who are unable to care for themselves (and are to much of a risk to be on their own) are being removed more and more in favour of inclusion and that inclusion is causing way to many mentally ill individuals to be sent to jail because the facilities that they need to function are no longer available to them.

We also need the government to realize that with approx. 1% of newborns being diagnosed with autism at some point in their life and that number growing quickly, we need facilities available to treat and provide therapies to all autistic individuals until such point as they are fully capable of integrating into society to such a point that they are no longer a threat.

What is the most supreme tragedy of this situation is that an illness that is believed to be inflicted by the pharmaceutical companies in conjunction with the government, by forced vaccination programs that not all are certain are safe, is leading to the government throwing them in jail for something that they realistically have no ability to control

We as autistic parents need to stand up and demand accountability from them.

Kaspar the friendly robot teaches autistic children to enjoy a simple hug

I found an interesting story about some work they are doing in the UK with a robot teaching children to read emotions.

I had actually been researching another article i planned to write at the time and found this story which when read through actually gives some hope that maybe a bit more functionality can be put back into the lives of some of the most seriously affected autistic children.

From what i have seen the results appear to be amazing and is just another tool technology has given us to help our autistic children. Sometimes I think that autistic children (and adults) get far better support from the technology sector then from the health sector or the government.

For years we have been repeatedly told that Dr. Wakefield’s study had been not repeated regardless how many times different researchers had tried. We have been repeatedly told that no matter how many ways the researchers tried no one had been able to duplicate his work.

Most of us have always known this to be a hoax as we were all well aware of the fact that a different doctor had replicated his results in the early 2000’s but what we only recently have found out is that not only was this research duplicated but that Dr. Wakefield’s research was not actually unique but was instead a replication of an earlier test done by another doctor.

This means that regardless of what the naysayers are saying that this study had been replicated in essence at least twice (it also leads people to question the reliability of the studies who “could not duplicate” Dr. Wakefield’s results)

We also know for certain that there were at least 12 names on the Wakefield report as well as any other names also on the other two doctors reports. This means that of 15 people involved in producing these results only one, Dr. Wakefield, was ever investigated/struck off for this result. This means that the BMJ and Mr. Deer have only two options. Either they must withdraw their accusations against Dr. Wakefield or they must investigate/strike off the other 14 doctors that have walked away from this mess with no discussion or no taint.

The sole reason that this research was attacked stemmed completely from the fact that Dr. Wakefield suggested the link between MMR and autism should be investigated.

The problem is that the reaction to his suggestion makes many people suspect that he just might have been onto something.

Personally I support vaccinations ( except one or two I consider extremely frivolous, however all major vaccines i support) but this does lead me to question their safety.  The only way to determine the truth is to completely investigate the safety of each individual vaccine both on it’s own and as a combination with other’s. 

This does not on it’s own explain why certain individuals contract autism while others who likely follow the same vaccine regimen might not and the only possible explanation would be some form of genetic weakness that would allow these vaccines to have an unforeseen (hopefully) reaction. The other small possibility is an existing illness of some form during vaccination may also trigger this reaction.

Only through full and thorough testing will we ever find out what option is correct and this is something that is going to have to happen soon.

I find this video to be quite realistic when talking to the majority of the medical field about the realities of what we as parent’s see when we watch our children progress

My issue is that by not focusing on research to find the true causes (my actual belief is genetic/environmental combination with environmental likely being vaccine related) and treatments/cures as well as focusing on long term care for those who are not fortunate enough to be able to function relatively close to NT that we are leading to issues like that seen here

http://news.yahoo.com/s/yblog_.....fifth-time

http://www.azcentral.com/news/.....utism.html

http://www.youtube.com/watch?v=xaJHfOBuzfQ

http://www.thestar.com/news/ca.....-for-weeks

http://canadiancrc.com/Newspap.....OCT05.aspx

While it is good to focus on the accomplishments of those who can achieve close to NT status or even better those who can achieve the status of “savant” http://www.aparentsperspective.....brain.html it is also imperative to spend a serious portion of effort looking at how to avoid long term care issues as well as public endangerment issues that come from those who are severely affected by autism and are not likely to ever be able to truly function separately from a full time care situation.

When we focus solely on the achievements of those who are achieving NT-like success, and the media is showing articles like those I showed above it means that those who are close to NT but still known to be autistic will never be completely trusted because no one will ever be sure how far they might be away from a situation that might put them in that type of situation.

We get to far away from research when we attempt to stifle any attempt to look into any possible avenue of research

It does not matter what the actual cause is. That cause needs to be identified and that can only be done through true comprehensive research. That research cannot happen when the community in and of itself supports anyone who is belittling any opinion in to possible causes no matter what it is.

The autistic community as a whole needs to stand up with a united voice and say ” we need to identify the true cause(s) of autism regardless what it is and regardless who we upset in the process”

I have been mulling over the possibility of using this blog as a starting point to create a charity aimed specifically at researching the causes/treatments and possible cures of autism. To do this properly I seriously believe that we need to ignore those who belittle any specific form of research and instead do everything in our power to exhaustively research every possible cause of autism including genetics or vaccines as stand alone causes and as linked causes between themselves or other possible factors.  I believe treatments need to look at each and every radical theory to determine if the solution is any specific one or various different ones depending on the individual child. I also believe that the cure option needs to examine all sorts of radical “cures” both to eliminate those that are slowing down other potential cures as well as to potentially identify those cures that may work in individual or mass settings.

At this point this is my thought process and it has been reached by watching people be so scared of saying the wrong thing or fearing that speaking the wrong words can lead to censure by major public figures or medical boards. We as a community need to stand together and say loudly “It is imperative we find the true causes of this disability so we can slow it’s advance through the population”

Repeatedly here in comments on this blog and elsewhere we have been told it is unethical to do a vaccinated/unvaccinated study and that it would be against the rules.

Well I went and found the rules and it seems there is an exception.

Special Protections for Children as Research Subjects

A fourth category of research requires a special level of HHS review beyond that provided by the IRB.

45 CFR 46.407 – Research that the IRB believes does not meet the conditions of 45 CFR 46.404, 46.405, or 46.406, but finds that the research presents a reasonable opportunity to further the understanding, prevention, or alleviation of a serious problem affecting the health or welfare of children.

If the IRB believes that the research does not meet the requirements of 45 CFR 46.404, 46.405, or 46.406, but finds that it presents a reasonable opportunity to further the understanding, prevention, or alleviation of a serious problem affecting the health or welfare of children, it may refer the protocol to HHS for review. The research may proceed only if the Secretary, HHS, or his or her designee, after consulting with a panel of experts in pertinent disciplines (e.g., science, medicine, education, ethics, law) and following an opportunity for public review and comment, determines either: (1) that the research in fact satisfies the conditions of 45 CFR 46.404, 46.405, or 46.406, or (2) the following:

•the research presents a reasonable opportunity to further the understanding, prevention, or alleviation of a serious problem affecting the health or welfare of children;
•the research will be conducted in accordance with sound ethical principles; and
•adequate provisions are made for soliciting the assent of children and the permission of their parents or guardians, as set forth in HHS regulations at 45 CFR 46.408.

base point being that this research would provide a reasonable opportunity to further the understanding of prevention or alleviation of a serious problem affecting the health or welfare of children. specifically two different issues 1/ autism 2/ vaccination rates.

the major issue is that no specific effort can be made to eliminate subjects due to outside factors.

specifically no specific tests can be made or required of the children before they are placed in the test. basically no pre-screening.

the purpose of this is to make sure that the makeup of the test is typical to the standard makeup of a normally vaccinated children.

Now the truth is that these tests should be done before any vaccine is released into the vaccination schedule. and this test should be done both individually and as a whole across the entire vaccine schedule.

The issue with no pre-screening is that the general consensus at this point is that autism is a combination of genetic and environmental conditions.  Pre-screening could potentially eliminate the target group that is being made autistic.

Now the major point behind identifying the causes of autism (and this study could also compare rates of any other diseases found as well) is that by identifying a specific group that is affected could potentially allow that specific group to be removed from the vaccination schedule.  If you remove all those affected by vaccines from the vaccination schedule and add those to the few who have legitimate concerns (Amish, religious conviction etc.) you could still maintain herd immunity which would generally achieve the aims of the vaccination schedule.

Basically we are all best served by identifying the causes of the increases in the autistic rates.  By identifying the causes we can reduce or eliminate these causes and reduce the increased drain on our health care system and justice system.

Eight-year-old arrested in school for fifth time 

Sometimes there are things done to special needs children in the US by authorities that make me want to hurl.

An 8 year old special education student from Orlando Florida is arrested and has a rap sheet after he “threw sticks” at his teacher. Now as the parent of a special needs student I understand that sometimes a special needs child’s behaviour can leave a lot to be desired, however to use the criminal justice system on an 8 year old is a futile effort at the best of times. By the time the child is “punished” he will no longer likely even be able to relate his “punishment” to his “crime” let alone the fact that using the justice system on an 8 year old special needs child is like using an nuclear bomb on to kill an ant.  It is disproportionate in the extreme and also does far more harm then good.  This child will never be able to trust police or the justice system if it is used to administer punishment for things that the parents and/or school system should be dealing with.  Several commenters on the article were commenting that this was the future generation of criminal in the making, and they are right if the court system is used to deal with basic discipline instead of working within the child’s special needs situation to develop a program to help teach him appropriate behaviour (many special needs children do not have an understanding of appropriate/inappropriate behaviour which leads to many “behaviour issues”). This is a prime example of a time when a program like ABA or IBI should be used to help the student adjust to normal behaviours.

I am appalled, and yes this type of behaviour by school administrators, the police, the prosecutors and the judge really does make me want to puke. 

The administrators at the school should be fired with all pensions removed.

The police (whose responsibility it was to stop this frivolous court case in the first place) should be disciplined severely.

The prosecutors and the Judge involved should all be facing competency hearings for not throwing this case to the curb the second it showed up.

This child needs to be properly taught with the appropriate evidence based therapies if there is to be any improvement in the child’s behaviour.

Continued visits to the court’s is highly likely to increase this students behavioural issues instead of improving his behaviour.

While it is questioned whether or not Daniel actually has autism due to his social ability this is still an incredible story of a savant that is typically only seen in a rare few individuals. While these rare few individuals are usually autistic, it is still quite atypical even amongst the autistic community as well.

I accidently found this video on a blog on the ChicagoNow network and found it to be incredible to watch.  The subject of the video is Daniel Tammet from the UK.

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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