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.