My Testimony on the New Jersey Autism Bills
At 10am this morning in the Senate House Annex in Trenton, New Jersey, a hearing was held concerning the package of autism bills proposed by lawmakers who are “[s]tunned by a recent federal study that found New Jersey with the nation’s highest autism rate,” as noted in today’s Courier News Online. I had planned to attend this hearing and prepared a written statement.
Yesterday, Charlie developed a cough and sniffles, and had periods of being very sad. He was in good spirits to see his ABA therapist on Friday afternoon, but did not do well on his reading program; on Saturday, he did not swim with his usual gusto. On Friday, four of Charlie’s classmates had not been in school due to illness: Jim and I suspected that it was Charlie’s turn to come down with a cold. He went to bed on Sunday coughing and woke up with a fever at 3am this morning and did not fall back asleep until 8.30am.
I cannot say how much I regret not being able to attend the Hearing about the autism bills. I am an autism advocate but, first of all, I am a mother and today where I need to be is home with a sick boy.
Here is my testimony.
March 5, 2007
Members of the Committee,
My name is Kristina Chew and I am the mother of a 9 1/2 year old autistic son and an Assistant Professor of Classics at Saint Peter’s College. I also write a weblog, Autism Vox, that focuses on issues of autism advocacy, the education of autistic students, and autistic adults. As a parent of an autistic child, I would like to thank the Committee for taking the lead in putting together an innovative package of legislation that seeks to improve the lives of autistic persons in New Jersey.
As a parent, I was particularly pleased to learn about A-4055 and A-4058, which establish that candidates for teaching certificates and current teachers, and also emergency personnel, be trained in autism awareness. As you know, the prevalence rate of autism in New Jersey—1 in 94—-is higher than it has ever been (and is indeed the highest in the nation); accordingly, there are many more autistic students in New Jersey schools. It is therefore of paramount concern that all teachers in New Jersey understand what autism is and also understand the specific needs and strengths of autistic students. One of my son Charlie’s former home ABA therapists is now an elementary school teacher in northern New Jersey; she has often told me that her experience teaching Charlie and learning the techniques of ABA have proved invaluable to her classroom teaching, as she has taught autistic students who are mainstreamed in her classrooms and also attended IEP meetings for her students.
This kind of understanding and awareness about autism is equally crucial for emergency personnel including emergency medical technicians, police officers, and firefighters, as sadly illustrated by the tragic death of Kevin Colindres. Kevin Colindres was an 18-year-old man with autism who lived in Miami. On December 12, 2006, police responded to calls from Colindres’ family that he was having an “altercation” with family members; Colindres was restrained by the officers. Colindres stopped breathing and went into a coma. He died on January 5th in the hospital. The tragic experience of Kevin Colindres and of his family is one that we strongly hope will not occur again, and an autism awareness program in which emergency personnel learn about autism, some of the communication difficulties of autistic persons, and much more is more than necessary.
As a parent of an autistic child who will soon be ten years old—and, very soon, an adolescent and then an adult—-I was very heartened to learn about bill A-4057, which establishes an Adults with Autism Task Force for New Jersey. A friend’s autistic son recently turned 21 years old; my friend was at a loss as to what kind of programs and other services would be available that would be on a par with the excellent autism education his son had received at one of New Jersey’s private autism schools. My son Charlie briefly attended an after-school program at a center in Union County that shared space with a day program for developmentally disabled adults. When I went to pick up my son, the adults were usually sitting at tables or in front of a video in a the large warehouse-like space. For the most part, they were not being engaged by the staff; the atmosphere was quiet and grim. It was not a program that I would ever wish to send my son to and I strongly hope that an Adults with Autism Task Force can propose and advocate for improvements in programs and services for adults in New Jersey.
To this end, I would like to explain my reservations regarding bill A-4057. First, the proposed Task Force does not include any adults with autism. This is a serious omission. As a parent, I have learned much about “autism from the inside out” from my communications with autistic persons via my website and also from their own writings. As an educator of college students here in New Jersey and in the Midwest, I have taught several students who have been on the autism spectrum. Many of these students have been able to explain to me how they are best able to learn in a classroom environment; they have also shared stories of doctors telling their parents that they might never talk, much less attend college, and of their earlier experiences in special education. To understand what it is like to have autism, it is imperative that we listen to the voices of autistic adults.
For this reason, I also have some questions regarding Autism Speaks, one of the organizations that is included on the Task Force. Like many parents, I am more than impressed and appreciative of this organization’s ability to promote autism awareness. One of the goals of Autism Speaks is to fund “global biomedical research into the causes, prevention, treatments, and cure for autism.” My own position is that, rather than devoting efforts to discovering some cause of autism, I prefer to focus on what we can do for autistic persons—for my son Charlie here, today, and now. In my son’s case, this means his education and also services and programs that can best help him flourish and develop his strengths. Witnessing Charlie learning and growing far eclipses any wish in me that he be “cured” from autism. Finally, I have some reservations about Autism Speaks‘ representation of raising an autistic child as a life of hopelessness and despair, of dreams lost. My life with my son Charlie is not easy but has been a journey of unexpected joy and learning, and much love.
As a parent with such concerns, I encourage that A-4057 be tabled for the moment and the two issues that I have mentioned be considered in order to make sure that the legislation can best serve the interests of persons with autism in New Jersey, including my son and many other adults with autism. And as a parent, and as an educator who looks forward to seeing more autistic students in her classroom, I wish to express again my gratefulness to the Committee for its attention to issues concerning with autism. Thank you.
Kristina Chew, Ph.D.
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POSTED IN: Adulthood, Autism Organizations, Disability Rights, Education, Health, Legislation, New Jersey, Parenting, Politics, Safety
47 opinions for My Testimony on the New Jersey Autism Bills
Harold L Doherty
Mar 5, 2007 at 1:54 pm
I can not understand a parent of a child with a serious disability arguing that efforts should not be made to find the causes of that disability. You may not want your child to be cured but other parents, with good reason, wish for such a cure. It is unfortunate that you are willing to diminish their concerns and hopes for their children. Autism Speaks does indeed speak clearly and without obfuscation of the challenges facing the many autistic persons who do not post on internet forums and the family members who care for them.
You very diplomatically slight, but slight nonetheless, the fine efforts made by those involved with Autism Speaks.
David N. Andrews M. Ed. (Distinction)
Mar 5, 2007 at 2:05 pm
Harold, you slight all autistics every time you call for a cure.
You have very little room to talk.
Kassiane
Mar 5, 2007 at 2:22 pm
Yeah, I know it TOTALLY slights people to be a bit concerned about their little hate video where they courageously talk about wanting to drive their kids off bridges. I can SO SEE how that’s MISINTERPRETING things.
Wait.
No. I can’t.
Pretty clear cut.
Are there many bridges in Nebraska?
Kristina Chew, PhD
Mar 5, 2007 at 2:40 pm
Harold, thanks for your observations and am always glad to hear from you. I am sure that research efforts to uncover a cause for autism will continue and hope that equal amounts of resources can be devoted to the needs of my son and of yours in their lives today.
Kristina Chew, PhD
Mar 5, 2007 at 4:32 pm
This link is to an article that contains testimony that was given just a few hours ago at the hearing.
http://www.thnt.com/apps/pbcs.dll/article?AID=/20070305/NEWS03/70305013
Club 166
Mar 5, 2007 at 5:00 pm
Kristina,
Thanks for taking the time and making the effort to speak up at the committee hearing. As much as it is important to raise awareness in our neighborhoods, and thru the use of things like your blog, it is even more important to raise awareness amongst those who make the laws.
I applaud your efforts.
John Best
Mar 5, 2007 at 7:18 pm
Kristina; The taxpayers would prefer that there aren’t any more autistic kids to increase their taxes. An ounce of prevention is worth a pound of cure.
Kristina Chew, PhD
Mar 5, 2007 at 7:20 pm
Mr. Best, thanks for your input; are you a resident of New Jersey or former resident that you can speak for this population?
John Best
Mar 5, 2007 at 7:58 pm
No, But I spent a lot of time in Atlantic City, so they have some of my money.
Ashley
Mar 5, 2007 at 8:13 pm
What a great letter to New Jersey. We are lucky to have you advocating for Autistic people!
Moi ;)
Mar 5, 2007 at 8:41 pm
I didn’t know you were going to speak at the hearing - when I heard about the bill, I was hoping you were involved!
Will keep my fingers crossed for you. PA has an Autism Task Force - usually the way PA goes, so goes NJ, and vice-versa…
Kristina Chew, PhD
Mar 5, 2007 at 8:52 pm
I didn’t make it to the hearing to speak, as Charlie was sick so I had to stay home (for a very pleasant and peaceful morning). But I heard from Ari Ne’eman that adult autistics will now be included on the Adults with Autism Task Force and my testimony will be sent round on the ASAN listserv. Next time I hope I can make it to the Statehouse Annex……
Donna
Mar 5, 2007 at 9:49 pm
A week ago we lived in New Jersey and our daughter went a special needs camp in Bergen County with swimming, horseback riding, arts and crafts, field trips etc etc etc. Our daughter attended the camp in the summer and on Saturdays during the school year. There were children, teens and adults at her camp and the campers really enjoyed this camp.
The thing that is needed is not just any input by a parent or by a spectrumer. What is needed is the input from the autistic adult who attends that camp or if they can’t speak for themselves then family input is vital. Not an autistic adult out of Trenton but an autistic adult in Bergen County who ATTENDS the camp. Having a dxes is not enough. Attendance at the camp is mandatory.
This is not an issue of just any parent or any person with a spectrum dxes or more adults speaking for those who can not speak for themselves. You MUST ALWAYS KNOW THE INDIVIDUAL! Services work because they are for INDIVIDUALS! The individual getting the services in this case a special needs camp.
Not sure how a NJ task force with autistic adults would be beneficial to the camp my daughter and teenagers and adults attend. You must be a camper at this camp or you have nothing relevant to add.
Political posturing can be a bad thing!
And there are lots of services in NJ. Your friend just needs to pick up the phone….
Another Voice
Mar 5, 2007 at 10:26 pm
I completely endorse your letter.
While NJ may have the highest reported rate of autism they also, according to the same CDC data, have a very early age of detection. This leads me to believe that they are ahead of the other states in their programs.
Kristina Chew, PhD
Mar 5, 2007 at 11:08 pm
Donna, I think you touch on the heart of the matter. Who is the best, or maybe just the right, or appropriate, voice for all of these concerns? It is the case that autistic adults are going to be members of the Task Force and that other members include state officials or their appointees, someone who represents COSAC and someone who is from Autism Speaks. Ari Ne’eman invited me to give testimony and, while there are many, many things that he can do that my son cannot, there are certain similarities. I think the fact that Ari’s organization, ASAN, specifically notes that “neurotypical family members, professionals, educators, and friends” are also part of it.
Another Voice: A friend from work’s son was evaluated for autism before he was 2 years old—-this little boy recently celebrated his birthday and I kept thinking he was 3 rather than 2, due to his being diagnosed so young. He’s doing well.
Caroline
Mar 5, 2007 at 11:29 pm
Your letter was extremely well-worded Kristina and on a ’sick day’ too.
I do want to state that many of the people featured in the short version of the film ‘Autism Every Day’ probably do not live in New Jersey (possibly New York state?) and therefore do not have access to the services that New Jersey provides. Please correct me if I am wrong about New Jersey, but in New York state, especially in New York City, getting any kind of appropriate services for a child with a dx is very very difficult and expensive. The competition for school spots and therapists is fierce. I salute the Wright family for all the work that they have done, but again, ‘awareness’ is not enough.
There needs to be an ‘acceptance’ campaign as well. Not acceptance as in ‘oh well, these kids cant learn lets not do anything for them’ but acceptance in terms of eradicating the stigma and fostering understanding and empathy.
These individuals deserve to be part of their communities not locked away or left to sit at home with their exhausted and depressed parents which seriously is common. A lot of people move to New jersey ‘for the services’. This should be a federal campaign.
I have never met the Wrights, but one thing that Mr. Wright said is something I have long observed from watching children ‘on the spectrum’ in waiting rooms - that these kids are desperate to communicate - they look so searchingly into one’s eyes. I really believe Mr. and Mrs. Wright live and breath trying to help those in distress. Families are shattered without any support.
For families with children who regress and lose skills and interest in the world, there IS a sense of hopelessness. The Wrights are trying to provide hope.( A lot of very rich people just quietly pay for therapy and do nothing to help the cause perhaps to protect their child but also because of the the HUGE stigma)
I just hope the awareness instruction provided by Autism SPeaks consultants (?) does NOT include robotic theraspeak and rote drills, and physically forcing children to ’sit in chair’.
Club 166
Mar 6, 2007 at 12:00 am
A lot of people move to New jersey ‘for the services’. This should be a federal campaign.
Unfortunately, I think there is some truth to this. The Federal Govt. would be the best venue to advance such measures, as otherwise it is in each individual state’s interest to NOT provide services (if a neighboring state provides better services, those people needing them will move there).
Phil Schwarz
Mar 6, 2007 at 12:59 am
Kassi, the “NB” in reference to Harold Doherty is not Nebraska (whose abbreviation, FWIW, is “NE”); it’s the Atlantic Canadian province of New Brunswick.
As for Autism Speaks, or any of the other causation-and-cure organizations Harold exhorts us to support: they will get my support when they have the people they purport to serve as fully empowered participants in their governance, and in steering their policy.
Much is made by those who argue for focus on causation-and-cure and (not uncoincidentally) against autistic people determining policy and priorities regarding autistic people, of a supposedly rock-solid discontinuity between “high functioning adults” and their own kids who will never do this or never accomplish that.
How can you be so sure?
What will you say to them when they *do* shatter your low expectations of them? When they need you to be on the same side of the battles for equity and parity in the larger society that those “high functioning adults” are on?
As the state of the art in responding to the needs and abilities of autistic people advances, more and more of them will achieve successes that put the lie to the supposedly rock-solid discontinuity. I have seen it happen in my family and in many others.
You need to be on *our* side of the good fight, Mr. Doherty, sooner than you think.
Drs. Chew and Fisher, and many other non-autistic parents of autistic children, have begun to see that truth.
KC'sMommy
Mar 6, 2007 at 1:13 am
Hope Charlie is feeling better soon:) Lots of colds and the sickies going around here too.
You are an awesome advocate Kristina. You are an awesome Mommy to Charlie:)
Kassiane
Mar 6, 2007 at 2:02 am
High functioning and low functioning are meaningless labels anyway.
Being able to speak and being able to communicate are not the same thing.
Being able to do either does not magically confer independant living skills (I’ve recently been described as moderate with a savant skill in descriptive language).
And learning to imitate NT just sets one up for a BIG fall. I know one of the ‘indistinguishable from peers’, and he isn’t, and has had three nervous breakdowns. He is 45. I KNOW no one wants that for their child.
Marcie
Mar 6, 2007 at 9:57 am
“The taxpayers would prefer that there aren’t any more autistic kids to increase their taxes. An ounce of prevention is worth a pound of cure.”
It sickens me how this issue always comes back to money. We have more than we need in this country and yet we have to produce more and more - and make the rich richer - instead of actually improving people’s lives.
Kristina Chew, PhD
Mar 6, 2007 at 10:15 am
It does always come back to money—-I hope we can do what we can to improve understanding and attitudes, so taxpayers know why we need to spend the money.
The seven bills passed, as noted in this article from the Courier Post.
Kristina Chew, PhD
Mar 6, 2007 at 1:51 pm
Caroline: It’s my understanding that a lot of the families in the Autism Every Day video (in the original shorter version; I have not seen the longer one) are from New York. I think some families are from Long Island in particular and I do know that there are some of the kinds of private ABA autism schools Long Island, but am less sure of the situation in the public schools. I do think the situation with autism education in New Jersey is rather unique as far as options and in quality (but this varies widely—I have seen plenty of places that I would never send Charlie too). Autism Speaks does seem to keep providing more awareness materials……I do find the term “awareness” very vague and open-ended. I guess I prefer to say advocacy.
Kristina Chew, PhD
Mar 6, 2007 at 1:53 pm
“How can you be so sure?”
That question captures a lot for me, Phil. I would never have thought that Charlie could ride his bike like he does and learn to stop in traffic, for one thing.
Marcie
Mar 6, 2007 at 1:54 pm
My I should expand my statement a little. I don’t have anything inherently against the discussion of money and taxes. (I’m a civil servant living in post-Katrina southern Louisiana.) What gets me is that so often disability is treated as an objective thing and then the worth of people’s lives are defined by this. When actually much of disability is socially defined. I could go on but I think those who’ll agree with me already know what I mean.
Marcie
Mar 6, 2007 at 1:58 pm
That was supposed to be “Maybe I should expand my statement” :P
Marcie
Mar 6, 2007 at 2:38 pm
P.S. I’m glad to here that the bills passed.
Darryl
Mar 6, 2007 at 2:42 pm
“What gets me is that so often disability is treated as an objective thing and then the worth of people’s lives are defined by this.”
A sad reality when the infinite worth of a person is put in the context of decidedly finite resources.
Rochelle
Mar 6, 2007 at 4:43 pm
Marcie, I knew what you meant in your post. The economics of services are often at the crux of disability debates. Sadly, these were the same justifications (economic burdens) used by the Nazi, to name just one example, to put to death disabled children and adults in concentration camps. Nazi propaganda proclaimed that a “disabled” life was a life not worth living.
Kristina Chew, PhD
Mar 6, 2007 at 4:48 pm
I really appreciate what you wrote, Marcie. Hope this does not veer too far from the topic, but—we have spent a lot of $$$ on Charlie, whether for his education, legal issues, moving households……And I’ve gotten the response from other people (consciously and unconsciously) that they are not at ease at the thought that we spend the equivalent of prep or boarding school in a child who, while certainly employable, is probably not going to be making the big bucks (though one is always glad to be surprised in this department, most of all for Charlie’s sake). The thinking, which is not in a good vein, appears to be something on the order of, why spend so much on someone who has “so little” to give back—-I rather see what Charlie has to give as infinite.
Kassiane
Mar 6, 2007 at 5:06 pm
Many of us aren’t going to make ‘big bucks’.
So what? A lot of prep school grads don’t either. Either they burn out in college or they decide they hate their job and find something else or get stuck in a cubicle and never move up or whatever. Or they get pregnant/get a girl pregnant in high school. Or there’s an accident. Whatever. At age 9 no one knows what the future holds.
And so many parents of ALL kids forget to ask their child what THEY want when they grow up anyway…it’s frustrating to watch…
Kristina Chew, PhD
Mar 7, 2007 at 12:24 am
ASAN President Ari Ne’eman is quoted in this article from the March 6th http://www.nj.com/news/ledger/jersey/index.ssf?/base/news-6/117316041966490.xml&coll=1
Ari Ne'eman
Mar 7, 2007 at 4:00 am
“What gets me is that so often disability is treated as an objective thing and then the worth of people’s lives are defined by this.”
It annoys me too. The ironic thing is that, in the end, we’re all disabled. Everyone. In some context, we all have certain things that we do not do as well as most can. (I imagine, for instance, that everyone commenting on the blog is subject to a disability in reference to hang-gliding, or perhaps seeing without the lights on.) It is simply an accident of how society is formulated that certain disabilities carry with them more attention and thus stigma than others.
Donna
Mar 7, 2007 at 9:54 am
It is the case that autistic adults are going to be members of the Task Force and that other members include state officials or their appointees, someone who represents COSAC and someone who is from Autism Speaks. Ari Ne’eman
People MOVE to NJ because of the services, supports and schools!!! All these things are working and set up for the individuals receiving the services, supports and education! And this all was ACCOMPLISHED without a task force!
It is very common in the autism community to assume that your autism is the next person’s autism and what was beneficial to you will be beneficial to the next person’s autism. Ain’t so!
A task force undoes what is currently working and in place and the reason people from Europe, South America, Asia, Africa as well as other states in the Union move here!
Why support anybody who wants to undo what is currently working for INDIVIDUALS (children, teens and adults) who reside in NJ?????
NJ doesn’t need CHANGE!!!! It needs more of the same!!!
Nope, won’t agree to a task force that throws a clog in the wheel and ultimately undoes what is so right HERE that people move here from around the world!!
Ari Ne'eman
Mar 7, 2007 at 10:55 am
On the contrary, while there may be changes to the bill that will make the task force include people on the spectrum now, the original version of the legislation did not include people on the task force. You can read the original legislation at this link, Donna. http://www.njleg.state.nj.us/2006/Bills/A4500/4057_I1.HTM
As for the other matters you spoke of, by all means I’m aware that my autism is not the same as that of others. That’s why my organization includes members on a wide variety of places on the autism spectrum, as well as parents, advocates and neurotypical allies. As for whether I’m “qualified” to speak about the autism spectrum generally, if Autism Speaks and other organizations that are not made up of autistics at all can speak on behalf of people on the spectrum, than certainly people on the autism spectrum can discuss issues that are relevant to our own fates. As many of us have pointed out in the past, it is more than somewhat hypocritical to complain that the autistics that do advocate for our community are unrepresentative of other people on the spectrum while at the same time supporting the right of people not on the spectrum to advocate for everyone on it. Come now, let us provide for some consistency in what we claim.
Finally, as for New Jersey, we have our good points and our bad. Right now the state has over three times the rate of segregated placements and is on a federal watch list because of that. We rank last in terms of inclusion, from that perspective. In addition, like many states, our adult services leave much to be desired, even though our educational services are generally very good in many ways. It was only this past week that the NJ Supreme Court ordered the state to serve individuals with disabilities that were not recognized before age 22. The intention of this Task Force is to improve the level of services for adults - not change the level of services being provided for students (though that too needs improvement). I encourage you to read the following report on inequities in New Jersey’s school system, put out by a broad coalition of advocacy and parent groups: http://www.njddc.org/fam14-1-1.pdf
-Ari
Marcie
Mar 7, 2007 at 8:05 pm
“The ironic thing is that, in the end, we’re all disabled. Everyone. In some context,”
Thank you Ari, for saying what I was thinking. I was tired yesterday and it wasn’t coming out right.
Donna
Mar 8, 2007 at 12:31 pm
Let’s not confuse Autism Speaks with NJ Legislation and NJ Autism Advocacy groups. Autism Speaks is a newbie organization!!!
Not every autistic will succeed in inclusion. That’s part of the problem with understanding the next person’s autism!! Might also want to check with the autistic students (present and graduates) who attend/attended schools for aspergers and autism and see if they like these schools better then being tossed into general eductation. Might want to check out the if the suicide rates for spectrum teens and adults in NJ vs. teens in the United States is lower
as well.
Sometimes instead of reading reports/newsfeed that are skewered to fit a personal political adgenda one should speak to the citzenry itself!!
And yes you are using a political agenda against autism speaks when NJ ain’t broken!
Stop confusing issues for an agenda!
Kristina Chew, PhD
Mar 8, 2007 at 8:10 pm
COSAC is also represented on the Task Force for Adults with Autism which, of course, is necessary, as COSAC is NJ’s largest autism organization. I would like to know the reasons for including Autism Speaks which is certainly seems to be poised to become the largest autism organization in this country, if this is not already happening. I hope that Ari Ne’eman, by requesting that autistic adults can represent themselves concerning matters about themsevlves, has opened a way to include other autistic adults with other perspectives and experiences.
Donna
Mar 9, 2007 at 1:24 am
Let’s see…
Clifton/Lodi/Wayne school districts etc etc had Stephen Shore in as a speaker to talk about the pilot program in the Bloomington School district which was attended by teachers, school administrators, parents etc etc.
Sean Barron, Temple Grandin and many, many local autistic citzenry have been in the school, in auditorium venues, at conferences etc etc etc.
The voters every year get out and vote for increasing school revenues which means the property tax goes up! NJ pays the highest property incrome tax in the nation!! NJ also pays in the top five the highest state income tax! More and more of the schools are having family members and associates from DDD (Dept of Developmental Disabilities) with the case worker from the school to fill the necessary paperwork to register the child with services/supports/$$$ outside the school day setting and in the home and community.
At my daughters school, past students have come back and talked to faculty, parents etc. Not just at her school either…other schools in Bergen, Passaic, Hunterdon, Warren, Sussex, Union etc etc counties.
There are other organizations besides COSAC and ASA (Southern Jersey) like Aspen etc.
HUD (Housing and Urban Developmental) is offering towns tax incentives when building luxury homes in NJ towns to make housing units for NJ’s disability community. Isn’t that the goal of education~~to teach children to live independently or with as much independence as possible? Isn’t that why NJ schools offer many different teaching methodologies i.e, TEACH, ABA, RDI and why so much money comes from local school budgets for adaptive communication i.e, dynavox or alphasmart?
Who cares about someone’s personal agenda with Autism Speaks? Not me!
Kristina Chew, PhD
Mar 9, 2007 at 11:53 am
Thanks for detailing all of this information—I really do agree that New Jersey is very active and informed as regards autism education. The issues raised here regarding the representation of autism by Autism Speaks are indeed not only limited to that organization, but can be found in the materials, websites, etc. of many autism organizations. More than a few individuals (and many whose concerns are in advocating for individuals with disabilities more generally) have concerns about the sort of representation of autism promulgated by Autism Speaks which, among autism organizations, is more than well-endowed with resources to make its message known.
Donna
Mar 11, 2007 at 12:41 am
I think some balance between internet life and real life.
Statistics pretty much agree that there are 1.5 million people dxed “autistic”. So hypothetically lets say there are 1 million adults. Are all 1 million dxed autistic adults online? All all 1 million adults aware they are autistic and that there is a ongoing decade old battle online for person with autism or autistic person? No!
If there are 1 million adults dxed autistic and say 10% are considered to be high functioning that means equally that 10% of the autistic population is considered to be low functioning?
So where does that leave the 80% of autistics? We know they are in communities across America. Some have jobs (part time with coaches or no coach or full time jobs). Some live independently with supports, some live with parents, some have roommates, some live in 24 hour supervised living areas. Some are verbal but can’t read and will never be on the internet. Some use adaptive communication. But they are in communities across America. They are getting services and supports and social security.
How many autistic people are online vs how many autistic people are there in real life? How many autistic people even know about an organization like autistic speaks?
Yes advocate for autistics. But don’t make the battle be about Bob Wrights organization!
There are 1,000,000 autistic adults getting supports/services etc. That we know! Can the services and supports in all 50 states be better? Absolutely.
But if you want people to take you seriously so that legislation is effective, take the organization Autism Speaks out of your vocabulary. Political agenda’s don’t get services and after awhile people get turned off and stop listening! And who is helped then?
Sarah
Mar 11, 2007 at 1:34 am
Where are you getting statistics on 10% “high-functioning”, 10% “low-functioning”, etc.? Not that those are even terribly useful terms. And I’m definetly not sure that one million autistic adults are getting services, because so few meaningful services for autistic adults actually exist. Of course, one of the other problems is that many (most?) autistic adults don’t even know they’re autistic. I’m glad that autistic adults are (very slowly) gaining more of a say in these policy matters, because quite frankly most of these parent-run organizations do a very poor job of advocating for us. I don’t really understand why–after all, one day their children will be autistic adults.
Donna
Mar 11, 2007 at 10:59 am
A little bit of history for you….
Prior to the mid 1990’s a social security check was mailed to anybody who had a disability not matter what their age was. Of course the economists added up all those checks and a social security check is now mailed when you are 18 or 21. Why do you think social security is going belly up? Have you ever looked at how social security monetaries are distributed? Have you ever thought that social security when elderely is based on how much you contributed over the years in your employment history? Have you ever thought about the autistics who will never be employed living on a monthly check of $500-$600 or so a month because they never paid into the system. I know, I know the autism hub likes to focus on chelation and lupron and let the big things go over their heads….
But I digress, if you have a legitmate dxes of autistic and you have the records to prove you attended special education you are going to get benefits, whether this comes in a monthly check or supports/services to live independently or in a group home etc etc. Many get benefits because they have this paperwork.
And a moment of truth is needed in the autism community. There are NOT 1,000,000 autistic adults online.
The middle of the spectrum is not online. The 80%. The 80% that was considered to be MR because you can’t test them with standard testing!
And yes this 80% can be found in communities across America getting services and supports…
Always gotta balance the Internet with In Real Life.
Kristina Chew, PhD
Mar 11, 2007 at 11:54 am
Donna, Thanks for all of the information. I’d much appreciate it if you might provide references for your statistics and percentages? Thanks much!
JULIETA RAMOS
May 12, 2007 at 11:31 pm
I am a mother of a 24 yr. old beatuiful young lady who unfortunately have not been diagnosed but displays a classic behavior of Asperger’s Syndrome child. Growing up she was diagnosed with slight autism to PDD to EBD during high school. I would like to know the website of the new home for Autistic kids in Warren Township. I am very much interested in knowing their program and would like to help many kids with the same problem. Thank you and Godbless!
Kristina Chew, PhD
May 12, 2007 at 11:36 pm
Julieta—-it is the school in Warren at this website:
http://mujc.org/
How is your daughter doing?
Jonathan’s Law
Oct 3, 2007 at 4:02 pm
[…] I wrote about a package of autism bills—on teacher training, issues concerning adults with autism, medical research, and more that […]
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