Living with Autism: A Parent's Perspective

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.