Of course, Mr. Robinson is correct: it's always easier to criticize than it is to create. So... if you were building your own 'Autism reform act,' how would you construct it? What would be the critical issues to include? Would you point to individual treatment modalities, name a sum to be spent, and create an office of autism compliance?
While I am not going to post a Change.org idea to compete with Mr. Robinson's, I do have a few ideas of my own... a set of holiday wishes for the autism community. These reflect my personal vision of the priorities we should be focusing on as a community.
Research Priority. Research into autism spectrum disorders should include a significant focus on distinguishing among syndromes and sets of symptoms, and testing various treatment modalities to discover which treatments are most effective for which individuals. Once appropriate treatments are prescribed, insurance funding should be available to cover its procurement as a medical necessity.
Education Priority. Education for children with autism spectrum disorders should be differentiated based on the needs and abilities of the individual child (as per the present IDEA). To achieve this goal, the IEP (which now focuses almost entirely on deficits) should be amended to include a section which focuses on benchmarks for building on individual gifts and abilities. To effectively educate children with autism, districts must have the resources not only to evaluate children's gifts and challenges but also to create and fund appropriate educational programs in and outside the typical classroom and school.
Transition to Adulthood/Careers Priority.. Transition to adulthood should begin with the understanding that careers in the United States can take almost any form - and that most people with autism do, in fact, have strengths and abilities that suit them for meaningful and fulfilling employment. The key is in matching passions and abilities to opportunities and appropriate support. Programs should thus begin with individually crafted transition plans that reflect unique gifts and abilities. Funding should support low-cost means for schools, universities, employers and employees to access training, coaching, internships, volunteer opportunities, telecommuting technology and other critical services.
Services for Adults Priority. Adults with autism should have the option, based on needs and abilities, to (1) remain in their childhood homes, with accessible funding (as needed, based on economic necessity) to support day to day living - without a requirement that they be unemployed or unemployable; (2) live independently with support (as needed, based on challenges and abilities); (3) live in a group or institutional setting which provides the greatest possible level of independence and personal fulfillment. To achieve these goals, it will be critical to provide funding, training, evaluation and benchmarks for success.
I've put these ideas together based on the idea that they may be meaningful across the wide breadth of the autism community. I think they're worth considering... but perhaps you feel differently! Feel free to pick apart - or, better, to propose your own ideas. What should our priorities be for 2009?
My wish for 2009 would be that there be a clear warning that older paternal age is a robust risk factor for non-familial autism, and other de novo disorders. I would like all to hear Dr. Harry Fisch’s (author of, “The Male Biological Clock”) advice: Harry Fisch- His advice? “If my son or daughter was to ask, I’d tell them to have kids early — and that’s before 30.” http://www.canada.com/topics/news/story.html?id=b4914025-d7f2-46c6-bcbd-2d4c50b06aeb
Greetings,
For our family’s needs our wish is that the govt. would realize, and make exceptions in their programs for intact families whose children who are affected by ASD.
What good is it to determine that a child is disabled, give him/her SSI and Medicaid, then tell the parents that they are on their own…we found out the hard way that though Medicaid is considered health coverage, no one who knows what they are doing will accept it as payment because Medicaid won’t cover the cost of services, so they just refuse to treat your child.
As the laws stand now, we keep hearing “NO!” to all request for appropriate and scientifically proven therapies such as ABA, ancillary services from the current school district, IEP’s that actually reflect the individual child, etc.
Hopefully someday, change truly will come to the great USA. Until that time, we will continue to lawfully homeschool our children…with no ancillary services from our State.
I hope that this all made sense.
Have a beautiful day,
Lesley
My top priority (and basically my only priority) would be the creation of a data base with encrypted contact information which would create matrices of degrees of autism, various autism symptoms, various heredity factors, immunization records, comorbidities such as digestive problems or allergies. If such a database existed, with thousands of people represented, researchers could search through the data and patterns would become obvious, instead of anecdotal. We might turn up total unexpected results, like “you are more likely to get autism if your grandfather had red hair”. It would help debunk some of the false associations put forth by people who do not understand statistics, like for instance, that older parents are more likely to have autistic children, when there is plenty of anecdotal evidence that people with Asperger’s tend to be older when they get married. (I was still a virgin when I got married at age 25.) This type of database could coax out the data of whether it was the third child of someone who married young, or the first child of someone who was older when they got married. This type of data would coax out whether immunizations made any difference. If we could start counting how many people out there have only been diagnosed with Asperger’s later in their adult life, we might be able to do some pro-rating and start figuring out if there has even been an increase in autism, versus an increase in diagnoses. You could even put social factors in the data base. How you were disciplined, how you were trained, how you were schooled, versus income, versus marital success, versus the ability to remain steadily employed, versus institutionalization, versus jail time.
You could track Asperger’s or autism up and down generations, was it on the father’s side, was it on the mother’s, how many of the girls in the family were not autistic, but weird, bi-polar, had obsessive-compulsive disorders, had schizophrenia.
As comorbidities which were unexpected started showing up in comment forms, they could be moved up to the matrices of the most common symptoms. People could be invited to use a password system to return to the database at intervals and review the changes in the way their data is entered, and changes in their own comorbidities. If patterns popped out that there were say, three most common types of essential autism, we might be able to look at the social data and design the best course of treatment for each, instead of a one size fits all. Right now we can’t even seem to separate fetal trauma autism from essential (inherited) autism, when the treatment for each should be radically different.
Since autism effects people in different ways, it’s hard to have one single priority when it comes to autism. There’s so many different behaviors, levels of autism, and on top of that, there’s a zillion intervention options. It would be difficult to come up with a generalized priority list for all effected with autism, or for parents to go by.
I also think no matter what the disability is, all parents are having a higher expense than typical parents. That’s a given. There is really no set financial support for any one, and it’ll even become less as the economy get’s worse. Budgets are cut every single year and it’s not like we can go to the Pres and ask for a bail out. There is none. We all hope our children are born perfect- as an example my nephew was born with a generic disorder and the expense is enormous. My brother has no bail out. My point is, we have to make things happen, and not wait for a bail out.
Where I live, there is adult support for those who need it. So scratch that off my list. I could advocate for other states but I’d hardly be effective being I don’t live there. Of the research, I may scratch that off my list since no matter where the study or research comes from, the whole autism community never agree’s with it. As for education, for instance my kid is going to have a hard time in school and he probably wont graduate at the top of his class and in fact he may need longer educational years to graduate. That said, I don’t rely on the school system to create a miracle. I have to accept the fact my child has academic delays and help him as much as the school is trying. Not all school systems are horrible. Many in the USA are great. Schools break laws all the time, there really needs to be a watch dog and pin point clear violations and then decide how those violations are approached; with or without due process for violating an IEP. At the same time, one has to maintain a working relationship with the school. A balancing act.
Giving this some great thought, I still think I will advocate for my child that the skin he was born into is just as good as skin as mine or yours. I will advocate for his acceptance and educate those who are around him. I will teach him that he isn’t autism; autism is simply something he was born with and we make the best of it as we can. My son is very happy to know he will not die from autism as his little cousin can with his genetic disorder. My son is proud of the things his been able to learn and do, just as any child would be who finally learns to tie a shoe. Should it matter to me if he did it waaaay later than kids his age? Things did at one time, these days I learn to look at my child and not compare him to what others can do. No one knows if one day my kid can do al that other’s can. These days with all the choices out there for intervention, unlike years past where choices were few, our kids have nothing but hopes of who they can grow up to be.
To put if rather simplisticly, I think they should study the unvaccinated and vaccinated population, and rate how much autism or other neuro disorders are in those groups. With that information, informed consent. Pick your poison, if you want….and or, let parents decide what course of medical action is best for their child. Even if that means, it ruins the vaccine program, yes, I said it.
Then with that information, no monies being sent to CDC or NIH to study autism, rather parents pick researchers who have no ties to industry. No politicians on the down low who pick pocket those pharma corporations and uphold the zealotry of vaccines for favors in office.
Secondly, a panel of experts tells Obama, what is killing/maiming our children, with our foods, such as high fructose corn syrups (banned in Europe), GMO and BT toxins, MSG/Aspartame (even the hidden sources), amalgams being banned (in Europe), what chemotherapy drugs/others are doing (as in mutating de novo genes, is it in the water, answer yes), what fluoride poisoning is doing (damaging Blood Brain Barrier, allowing heavy metals to enter and huge IQ loss and cancers and duming down of America, and lastly but not leastly, what immediate cord clamping/birth drugs in hospitals is doing to brains of children? Thusly, asking the question, in home births how many autistics are present, and the answer to that is none.
The point being, their won’t be need for a panel once these things are removed from the market and so called regulatory commissions that say things are “safe”, the pollution is cleaned up in a greend up acceleration as if our lives depended on it, fluoride is removed, foods are organic and non GMO, and babies are born with their cord bloode (whole volume of cord draining, instead of thirty second clamps which asphyxiates the brain, not in a research lab which fetches thousands of dollars for stem cells.)
Lastly, that their are admissions how many people have lyme disease, which causes the immune system of that baby to be already collapsed by the time they are vaccinated. Most kids with autism and their parents are positive.
And on that grounds, stop the vaccinating of this generation until we figure our how exactly they are damaging the body and why the predisposition to injury is up.
I would rather prevent autism, by making our bodies READY for having babies (no amalgams, functioning thyroid glands, no infections), then to monitor autism, and cause committees to be lost in red tapes, while at least every thirty minutes, a child is diagnosed with autism. Why isn’t their a panel on PREVENTION, instead of monitoring, and health insurance policy people, who have their say on how to treat and pay for it? The lyme people have plenty of stories how great they have monitored lyme, and ask them, they suck at it.
Lastly, no politicians on the panel, or “experts”. Get the parents on the panel, and they will tell you what is wrong in our world with autism. First and foremost, they will tell the panel, what caused it in their child, bottom line, the parents are the experts, not the doctors, not the researchers, not the politicians. Let the parents POLICY shape this, not the panels selected to hide certain facts. ABA therapy should be given to any diagnosed, regardless of cost. It should be a special ed teachers cirriculum for an autistic. Don’t house kids in school as a baby sitting service, lets get at the real problems, and quite feeding them gluten and casein at meals and lunch hours. Possibly, not sending them on fumed buses for hours on end, missing chances to recover them, if not expose them to toxic fumes.
The list goes on, but as an expert parent living it, who will ask those parents what is up?
Thank you for your informative blog. As I stated yesterday I am looking for input and have requested it several times to be sent to my yahoo email address Peace4kids@yahoo.com.
I can take constructive critics.. I can take just plain old ‘attacks’ based on what my thoughts or beliefs are – as an Advocate you must be able to do so. I appreciate what you and others have shared that is constructive and will use the input given to change the ACT to fit the needs of parents and especially those on the Spectrum. No single modality is considered there.. and the funds are necessary to do what is needed, Educate, Research, and fund non profits that need it and show a necessary cause for such funding.
I do not ‘disagree’ with what anyone states regarding the act, I may pay no attention to blatant non informative posts.. but those that have made statements about what they would like to see in this ACT I will definitely pay heed to and add it to the compilation of input given from parents Nationwide. I respect the thought of others and ask that anyone with input that would change or add to the ACT please give it as you did in your Blog. Have a Happy Holiday season,
Michael E. Robinson, Sr.
The Office of Advocacy for Autistic Children
I’d also suggest the construction of more off-season programming for children of all ages on the spectrum. We need a summer camp system that is funded and appropriately staffed. Parents who are exhausted from a year of advocating fruitlessly in school districts must annually turn their attention to finding appropriate programming for empty weeks of summer.
Yes, I agree with big issues like funding the IDEA, insurance coverage for autism therapies, fixing the broken OAH system and so forth. But none of us are effective when we are drowning in our day-to-day responsibilities. We need access to safe off-season programs that will alleviate the sudden drop in activity from school to summer idleness.
“To put if rather simplisticly (sic), I think they should study the unvaccinated and vaccinated population, and rate how much autism or other neuro disorders are in those groups.”
You’re right – that is simplistic. Where do you propose to find these “unvaccinated” children? What confidence level would the anti-vaccine community accept to finally give the long discredited vaccine/autism link the burial it deserves?
http://photoninthedarkness.com/?p=154
Smith (2004) estimated that .3% of children ages 19 to 35 months have never received a vaccine.
So of the 4 million children born in, say 2006, who will be turning three next year, according Smith’s study, only 12,000 will be completely unvaccinated by year’s end. That’s a very small sample when you’re looking for a disorder that only occurs 66 times per 10,000 population. So we would need a larger sample.
But the older unvaccinated children get, the more likely they will be vaccinated as they enter the school system, or come in contact with social workers. So the pool of unvaccinated kids shrinks with each older cohort.
If you only study 3-6 year olds in the US, the pool will be no more than 50,000 children, probably less. Given a known prevalence of all ASDs of 66:10,000, you could expect 330 cases in the unvaccinated population if there is no association between vaccines and ASDs.
Here are some problems: first, how long would it take to round up every unvaccinated kid in the US for such a study? How many parents would agree to such a study? (answers: a very long time, and not all of them).
Even if you found 50,000 kids, that’s too small of a sample to produce a reliable result. What if only 300 of the kids had an ASD – would that be good enough for the anti-vaccine leaders to let this thing go?
What study outcomes would Kathy Blanco and others accept?
A far more realistic study would be to compare the amount of thimerosal uptake in children to the prevalence of ASDs. In other words, are children who have received less than 25 mics of hg in TCVs before age 36 months less likely to have an ASD than age matched children who have had more than 25 mics?
Studies like that have been done, with predictable results. In fact, most of today’s 3-5 year old have never received a TCV.
So I ask again – why aren’t diagnoses falling?
“Lastly, that their (sic) are admissions how many people have lyme (sic) disease, which causes the immune system of that baby to be already collapsed by the time they are vaccinated. Most kids with autism and their parents are positive.”
Are you saying most kids with an ASD are positive for Lyme disease? Really?
I know that this is just a blog, but still. Lyme disease? Do you have any credible evidence for such an astonishing statement?
No one will ever agree one a study. There’s plenty from other countries with no relation to the USA and still, their findings are argued even though some of those studies are impressive. I would also agree, you’d never get the population for such a study, you’d also have to know who had diagnosed the child; the school or a medical doctor plus you’d have to rule out a mis-diagnosis. You’d also have to find out why children on the same schedule do not have autism, and why some do. Why not use current findings? Kids who never had one vaccine still have autism, and those autism rates have not been dropping.
If a panal is created with out experts, we’ll never get any where. Parents will not offer scientific facts. If parents were to be chosen, they’d need to be proven to be unbiased and you’d still have the fact that since no one knows the causes of autism, what a parent may bring to a panal may not benefit all with autism if they are not unbiased.
If we’re talking about a bunch of environmentals and ingestions of foods and fillings, home births would make no difference into this. The statistics then presented would mean home births likely would include children with autism.
Lastly, Lyme Disease. This is a newer theory and of all the parents I have met over the years, none of the mothers have this.
This is the current post that went out to about 150 yahoo lists today. We may not agree on all issues but we must come together in one accord and Make Change Happen.. we are 5th in the Nation and in the final top 10.. we are #1 in Education.. more positive input would help.. constructive input is taken and used as necessary.. comments that are vulgar or just critical without any help to the cause.. will be discarded. Thank you,
Micahel.
2.
Door is OPEN- 5th Highest Overall Rated Idea for Change in America..
Posted by: “Michael E. Robinson, Sr.” peace4kids@yahoo.com peace4kids
Thu Dec 25, 2008 11:54 pm (PST)
Listmembers,
Throughout the last few weeks we have had several what I would
call ’shocking’ reports regarding the treatment of children with
disabilities and as well the treatment and retaliation of those who
try to help them. The CNN reports of time out rooms and cells should
concern EVERY parent regardless of whether their child is disabled or
not.. if for you have not looked at this site I believe you should,
however awful it may be it is the horrifying truth for the children in
our schools…regardles s of disability or none.
http://www.cnn. com/2008/ US/12/17/ seclusion. rooms/index. html
After viewing the article and seeing the video of the father of
the child from GA. that died in one recently, it is not a ‘fun’
subject to discuss – but discussion must take place and action after such.
The other very shocking news came to you in a post recently..
Regarding an Arizona Advocate that is facing 150 plus years prison in
a retalitory action against him due to the fact he was a ‘winning’
advocate with not only a record of due process wins. The arresting of
him with guns drawn is simply wrong. Haven’t we had enough ?
So, many parents and those on the Autism Spectrum have responded
rallying the ” Autism Reform Act of 2009 ” , And relief for those that
have been or are in Special Education or Disabled “.
This is not a replacement for the ADA but I personally think the “ARA”
should be an ACT that is reauthorized and continued after it has been
made acceptable to the President Elect and the Legislative branch that
will ratify and fund it.
THE ACT IS CURRENTLY IN 5TH PLACE IN THE NATION FOR ALL IDEA’S FOR
CHANGE IN AMERICA. In the ‘Education’ category it is 1st by almost 600
votes and almost 800 votes over the 3rd place idea that will also make
it to the final round.
We have made a statement as not only parents but also those on the
spectrum or with other disabilities. I believe strongly that the
‘force’ of the movement of parents must at some point, and I believe
the time is NOW, join together with the large population of those on
the spectrum or disabled that are Adults. This is for them, and if we
are going to speak for them they not only deserve a ’say’ in it, they
are needed for input that has already been crucial in revising the
proposal in ways I believe will be more acceptable to the
President-Elect and to the entire community that needs to merge..those
with disabilities on the spectrum or not, and those that are parents
of disabled children and are going through the education process. By
looking at the ‘finished product’ or person that has gone through
special education we get insight that we could only get from someone
that has actually been in the students chair, been denied something
unfairly as an adult such as SSI, being put on waiting lists for
Medicaid waivers, and so on. How long should we just sit here and say
” I don’t like this part” ” We can’t fund this ” (We’ve funded
bailouts totaling a trillion plus when you include the fannie/freddie
and we’ve also spent just as much/more on war) ” This should be
changed ” (well email me or respond with some constructive input for a
change or addition to the the ACT) “I just don’t have time to read
this post or concern myself with this
because….. …” (Our children and those that are older kids of ours
come first, take the few moments and do what you can to make the
difference.. Please) ” I don’t think the Aspies and others that are
adults can make these kind of decisions ” ( Believe me they can and
already have !)
So lets open our minds to the possibility of real ” Change ” , the
kind that counts. Regardless of what political party we follow,
regardless of what beliefs we have that are different ” I like the
GFCF diet ” ” I think HBOT is the way to go ” ” I think chelation is
all that works ” ” All kids need a 1:1 aide (this may be close to very
true for the younger kids on the spectrum and with other disabilities) “.
REGARDLESS.. . we must join together and forget about indifferent
feelings on subjects that will result in absolutely NO funding unless
we come together in a strong accord and make something happen.
This is not ‘my’ act.. as I’ve said before it belongs to the people,
made by the people, and for the people. I’m just a concerned dad with
a big mouth that types fast (but I can say enough is enough, time for
change NOW) ! No more kids need to die, no more adults on waiting
lists due to underfunding the Medicaid Waiver program, no more kids in
unsafe inappropriate environment pulling out their hair as the one
young girl did in a time out room…. The bottom line is we have an
OPEN DOOR now.. we have attention and need to go after it. Please
email me offlist at Peace4kids@. .. and let me know your input. It all
counts.. some are major ideas and some are compiled with ‘like’ ideas,
all of which will appear in some shape or form on the final proposal.
The input I am now getting from the Adults on the spectrum is quite
large. We have several ‘groups’ ….and in the last 12 years I have
not seen unity at all within them.. lets as parents be patient and
listen to our kids…let them give input..as Adults they have valuable
information. .And those on the spectrum or with other disabilities. .
try to keep an open mind as far as the possibility we now have as the
5th highest rated idea in America and Number 1 in Education a basic
‘given’. Those who haven’t supported.. please take the time to
register and support – your input matters.
http://www.change. org/ideas/ view/accept_ and_sign_ the_autism_ reform_act_ o\
f_2009
Michael E. Robinson, Sr.
The Office of Advocacy for Autistic Children(soon to be Individuals) .
The Lyme disease rumor is illustrative of the anti-vaccine movement’s incoherence and lack of discipline. This is all the more reason why evidence and reason are so important when we talk about Autism Priorities for 2009.
Mr. Robinson~ It’s difficult to make choices and decisions when you don’t site specifically info about the advocate. As for the CNN article, what should be learned here besides time-out rooms, is the parents had no idea just what was meant by this. The parents assumed what a seclusion room was: time-out in a corner. Every parent should investigate what means the school uses, and adjust for this in the IEP. Every parent should be aware and know what they school is doing with their child, and why that child needed to go to ‘time-out”. When the boy told his parents he was going to time-out, the parents needed to go directly to the school and find out why.
As for the advocate in AZ, it’s difficult to know for sure which you are speaking about however there is one that was investigated for a year for defrauding the school of 20K.
Some one has to do some real investigating and keep an open mind. Just because some one calls themselves an advocate does not mean they automatically get my support when they are charged with a felony. Everyone should be aware there are scams and scammers around every corner.
Also, many children are harmed and die at the aide of their parents when attempting to remove autism from their child. It is sad when any child dies, there should be watch dogs for all who take advantage of parents and children regardless if it’s the school district or the parent.
I would like to see better services to those children who have severe behavioral challenges. Trained respite workers and trained support staff for school are very, very hard to come by, and I am struggling to keep my son at home. Right now, today, I am looking at another mental health arrest because I cannot get the support my son needs at home.
Seems to me that if the research could conclude the causation of ASDs, then we could begin to get past the arguments over cure/anti-cure, pro/anti-vax, etc. Without much definitive research the personal opinions fueled by anectdotal experiences allows these divisive debates to rage on. Also, the same goes for treatments and therapies. Research is required to prove/disprove diets, supplements, educational strategies,etc. Of course, there will always be those who continue to try and “sell their wares” no matter what is proven, but at least more informed decisions could be made by individuals affected by ASDs. I definitely agree with Lisa that supports and treatments should always be based upon needs, not just upon diagnosis. That is true of every diagnosis and should be the same for ASDs.
I agree completely with your ideas. My concerns right now involve a teenager heading into adulthood. I am concerned about where he will fit in after he turns 18. Will he loose benefits because he lives with me, is assisted living better for him and in fact, would he be eligible? What about insurance for his medicines he’s taking? All of these questions riddle my mind constantly. Time is of the essence for all of the parents at this very stage of their child’s life. Legislation must change to allow for these issues to come full circle.
My wish for 2009 is that while fighting for yours and my childs rights that we remember that these children be allowed to be children. Lets not bombard them with so many things that they can’t have free time to be themselves. I know of one parent that has their autistic child in swimmming lessons, karate classes, school and etc. The child is always tired and complaining. Lets let our children be their autistic selves. Let them have a childhood. We all have our quirks and they need their quirks to.
I am in support of the need for REAL change for our children with Autism and ASD’s as I am a parent of a child with Aspergers and Bipolar 1 disorder, there are so many areas that need changing, like having staff trained, available and responsible for parents and children to lead us to supportive systems whatever they may be. There is no one responsible to direct you to the services needed, no one to advocate who is experienced in ASD’s in the school environment, as well as afterwards. Many parents and kids go years and maybe a lifetime without the services that may have helped them because there is no one to guide you to these resources and many people get to exhausted and never find these “hidden” services. I also belive there needs to be specialists in school, as well as a requirement for pediatricians for license renewal to be trained in Autism and ASD’s as many flounder in these areas and these are the first people many parents look to for advice on the What Next question. I am very glad to see that FINALLY there is some attention to our children to represent them and start the process of recognizing that these kids are special, and need advocating. I also believe that there is room for the adding of valuable opinions to this reform act as then it may be better suited to represent our children
I left my email address for input from here but apparently it’s all in the comments. I do believe that the different ‘groups’ with different beliefs that basically should agree in whole to disagree with each other and keep those not involved out of it. As an Advocate what the parent needs for the child or what the adult needs for himself is the goal – not my agenda. My agenda is within my own home and that’s where I keep it. I think I’ve explained myself pretty thoroughly – if anyone wants to actually view the rough draft of the final it has already been circulated to some on the net but you can request it through my email address in my above posts.
Thank you,
Michael E. Robinson, Sr.
my child has aspergers and my wife and I are having a great diffucult time with the school that he is going to and have had problems with the same school district for years they dont understand how to teach a child with autism or aspergers my child is bullied by other students, belittled by teachers and the principal does nothing about it but put the blame on my child and us there should be a independent person that is trained to go to the schools to be there on the side of children and families and not the school that knows about autism and asperger