Katie Wright Reports on the IACC Meeting: Common Sense & Compassion in Short Supply
By Katie Wright
Sorry everyone that this IACC post is so late. I honestly had a tough time getting through all 6 hours.
At the previous IACC meeting Lori MacIlwain and Wendy Fournier of the NAA made a devastating presentation about ASD child mortality. An incredibly brave Mom, Mrs. Sheila Medlam spoke so eloquently about her child’s death due to wandering. Shelia spoke for so many of us when she described how quickly an ASD child can disappear. Her son, like mine, had no awareness of danger and almost no safety instincts. To make matters worse, nonverbal ASD children are highly impulsive and cannot respond when searchers are calling their names. Mrs. Medlam urged the committee to make safety an IACC priority- particularly by providing interested families with potential life saving track devices and to aid in the support and training of first responders, teachers and other community service providers.
It seems like we read about the tragic death of an autistic child on a weekly basis. As Geri Dawson pointed out these children had good parents, responsible care givers, it is extremely difficult to keep these children safe literally every moment of the day and night. These families need our help. This should be an EASY issue for IACC to support. I mean does it get more black and white than choosing to do something or choosing not to do something to help prevent horrible tragedies?
But among certain IACC members common sense and compassion is in sort supply. I was astounded that a parent of an ASD adult, like Ms. Ellen Blackwell did not support this measure. I imagine her son is verbal and relatively high functioning but surely she must understand that most ASD children are not so fortunate? Ellen insisted on muddying the waters by demanding wandering prevention to be linked with the ending of the use of restraints. This is a valid objective but a different one. I was astonished at Ms. Blackwell’s continual nitpicking of the wandering provision and her refusal to support this measure. Shameful.
Ari Ne’Man is just 22. He is a brilliant young man. But he is not a parent and has never felt the awesome responsibility of parenting and protecting a child with a form of autism so disabling, so unlike his own. Ari does a great job advocating for the interests of his community but I think his intransience on this issue was both hurtful and unnecessary.
A major criticism of the neurodiversity movement is that its members lack compassion and understanding for children who are severely and medically affected by autism. This was an opportunity for Ari to prove to the community of families that he “gets it” by supporting this issue- so central to the lives of families with severely affected children.
Both Lyn Redwood, Alison Singer and Geri Dawson tried to break down the opposition and help IACC members understand the bigger picture, the urgency of this issue. Once again I was so disappointed that other public members did not express more vocal support for this measure. Too many IACC members were a brick wall of resistance.
I saw a new face at IACC Sharon Lewis. Lewis was positively hostile towards the wandering prevention program. Ms. Lewis does not represent the public; she is neither the parent of an autistic child, a medical professional, a clinician, an expert in autism, or a person current on clinical issues affecting the ASD population. Why is she there?
Ms. Lewis strongly advocated “stepping back” and doing more “research” on wandering deaths before supporting anti wandering programs because “we don’t know enough.” OK, what is there is know Ms. Lewis? How is this complicated? Autistic children are incredibly impulsive and lack an appropriate awareness of danger. This is a terrible combination. Autistic children are dying despite the best efforts of so many families to keep them safe. Let’s do something about it. Let’s help provide families with tracking devices or alarms for their homes. Why does Ms. Lewis insist on “stepping back,” why not “step forward?”
Sharon Lewis did not even attend the previous IACC meeting. Ms. Lewis did not even hear Mrs. Medlam’s presentation, yet feels very strongly that this measure is not needed. Does Ms. Lewis know anything about life for a nonverbal severely affected child with autism? If she does Ms. Lewis is cruel, if not she is irresponsible.
Lee Grossman is also on the safety subcommittee but rarely participates in the meetings.
This brings me to another point. Please do not accept an IACC public seat if you cannot show up for the meetings. We already must deal with continual absences from ISCC federal members who Our families have such a small voice as it is. We need our public members to be present and contributing at meetings. Don’t waste a public member seat. Being on the phone is not the same as attending in person. In fact the phone process is a nuisance for all involved. The cell connections are often inaudible and too much time is wasted up trying to decipher what the caller has said. Public members Dr. Gerry Fischbach of the Simons Institute, Lee Grossman of ASA and Denise Resnick of SARCC all attended the meeting by telephone and not for the first time. Dr. Yvette Janvier , who almost never takes her seat at all and represents no constituency, did not attend, period.
I would like to remind Dr. Francis Collins that Wendy Fournier, president of the NAA and representative of 14,000 families, Becky Estep of TACA and representative of 16,000 families and Jane Johnson president of the Autism Research Institute serving tens of thousands of families, are ready to take those public seats and commit to attending all IACC meetings.
I don’t understand the priorities of so many IACC members. Ellen Blackwell and Walter Koroshetz expended so much of the committee’s time discussing the Strategic Plan’s language. Will it be smooth and “prose like?” Who cares about prose if IACC isn’t interested in doing something to prevent child mortality? Ms. Blackwell wastes so much time quibbling over minutiae: typos, punctuation errors and meaningless details.
It was good to see IACC taking up the issue of the Somali ASD cluster in Minneapolis. Autism Speaks and the CDC will be conducting a population surveillance study. Dr. Geri Dawson spearheaded this initiative due to public demand. It physically pains me that ASD families have to finance this work but we must get started. Certainly our community would rather pay to begin the research than delay this important study any further. Dr. Boyle spoke about the current federal limits on funding and stated something to the effect that AS does not have that problem. Ha! As if AS’ money falls from the heavens. Dr. Boyle needs to understand the money she will be spending comes directly from autism families. Through their sacrifice and hard work Boyle will be able to begin a study the CDC should have begun 3 years ago.
Finally Dr. Alan Guttmacher gave a bizarre speech about studying prenatal diagnoses and termination options. I know Dr. Guttmacher was only laying out the issues certainly not advocating for ASD prenatal termination. However I found the whole discussion utterly depressing. On and on about Downs Syndrome, dwarfism and CF- all single gene genetic disorders that have nothing to do with autism! I hate the feeling that the NIH is giving up so easily on our kids.
I would not dream of telling parents whether or not to terminate babies with Downs Syndrome or dwarfism - although the vast majority do. However, autism is NOT a single gene disorder and is rather, in many cases, an environmentally triggered disease. Why do IACC members so rarely discuss or prioritize these environmental factors causing autism? Why in the last NIH funding round for ASD research did environmental science comprise approx 10% of the total? Why is it so often only Lyn Redwood pushing and prodding for more biomedical and environmental research? IACC’s emphasis on preventing regression or the biomedical manifestation of autism seems minimal compared to the weight of the discussion given to genetic testing. We desperately need more parents and competent clinicians around that table to represent our children.
Are you listening Dr. Collins?
Katie Wright is a Contributing Editor to Age of Autism.
Thank you Katie for your report on this very important issue. As a parent of a child who did elope and a sibling who died from being restrained, both individuals with ASD, I feel these are important issues, as are issues of victimization and abuse and social justice.
However I agree with some of the views of others that have been submitted. The IACC has done something by just establishing the committee, the members for that committee however should have been chosen as those that could have effectively worked toward providing an answer, and not doing so only from the perspective of the organizations they represent. There seems to be way to much of that on the IACC, and it gets in the way of getting the job done.
The same holds true with folks endorsing certain programs, methods, or products. There is no one answer, this will take more than one solution as well as accurate data collection to show it's working. Lets not develop or ask for something just because it will further line the pockets of folks.
In this situation we want to keep loved ones safe from wandering. Ok so ask these folks what do you do to keep an individual who is deaf safe, or has a vision impairment safe, or has dementia safe? Why if those communities have specific programs can't individuals with ASD?
Same holds true for restraint and seclusion in any setting. That also is not an item specific to autism. So ask those same questions and then ask these committee members why should keeping one population safe be different from any other if they have specific needs. It shouldn't be period.
It comes down to common sense, not about self-determination or civil rights. However by those individuals trying to keep those for individuals with ASD intact, they are also denying them the right to stay safe and parents and the community educaiton on prevention programs. That in itself is morally and ethically wrong and that should be a simple realization.
Ellen did indicate these things should be covered under Medicaid. Well folks need to send her stories where that has not transpired. I know of at least three families that tried to access locator equipment, fences, etc. and were denied those things because they indicated it would restrict their freedom. Well each of those families paid on their own and the child still eloped, the police called, and CPS cases opened.
I also fear that this can be a double edged sword, people discussing the risk involved for a population. Will that then limit access and inclusive services? Perhaps that is what these folks fear, but if that is the case, they should then say it.
The R & S issue also should be a seperate venue and discussion as well because that is an agenda item for Ari, Sharon, and Ellen has experienced it with her son so it does hit a raw spot. But it's not the same in what the deliverable will be for prevention of both in my mind.
It does need to go beyond writing a letter to an HHS Director, because it involves more than that agency to respond with a solution, appropriations, and a deliverable. These need national initiatives and they've been needed for years and folks have tried. But taking three months to write a simple letter shows this isn't the right place for this. A survey too will not promote any other solutions either.....we already know this is happening and children and families are suffering daily.
There needs to be data and that is an easy fix within accidental injury and crime reporting. Simple solution that will assist every individual with a disability, not just ASD.
Posted by: Carolyn Gammicchia | February 04, 2011 at 05:48 PM
The way I see it these bureaucratic types are not benign. They are and possibly will be responsible in the future for the death of children. This is an urgent matter. Shut up and act.
Posted by: Jersey Joe | February 04, 2011 at 09:51 AM
Not in Ari's league, however my son is considered high-functioning. ( I always add- except when he is not. ) He has come a long way from when he was three and we were told to think 'institution'. I would never be dismissive of any issues that affect families of children with either severe or mild autism or any other disability for that matter.
I don't want to be lumped in with those parents who are unempathetic towards the issues of other families. Years ago before I had any experience with autism, I would have thought that those parents are simply selfish shmucks. Now I look at their indifference to the plight of others and think-okay, so maybe genetics plays a big role in your family's autism.
And this is why it is inappropriate for any one person/group to say they speak for all. Consequently I don't know how any one group's needs are going to be met under this umbrella.
Posted by: samaxtics | February 03, 2011 at 10:29 AM
I agree that elopement is a big issue. However, I am not sure that the IACC is the body who ought to focus on it. ASA. AS, and many other advocacy groups have already created efforts to educate first responders, other safety officials, and, most importantly, parents and caregivers on safety issues (see the below links). While there is much work left to do (and it should be done), the IACC as a body seems unable or unwilling to accomplish much of anything so it's probably a waste of time and effort to try to get them to focus on a coordinated safety agenda. If the neurodiversity crowd, whom Sharon Lewis seems to be a fellow traveller with, have a different set of goals and a lot of clout on the Committee, perhaps it's better to do an end around. Ne'eman and his followers don't appear to care about anyone other than themselves. Perhaps that is part of their disability, but it is a very harmful aspect to many people with ASD's.
http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5058283/k.BE40/Home.htm
http://www.projectlifesaver.org/
http://support.autism-society.org/site/PageServer?pagename=research_safeandsound
Posted by: Dadvocate | February 03, 2011 at 10:00 AM
Lori says it better than I ever could.
Ms. Blackwell has had 3 years to ask the IACC committee to create an anti-restrainst program. I would love to see that happen! I wish her only the best of luck making that happen! I am sure 100% of the autism community of stakeholders would be behind Ms. Blackwell in these efforts.
This is not a case of either or- not at all. But for the life of me I cannot understand why any ASD parent would oppose a measure to prevent child mortality? Why hold up a life saving program? I just do not understand Ms. Blackwell's position.
Posted by: Katie Wright | February 03, 2011 at 09:47 AM
Ben, we recommended that a safety subcommittee be established so that issues of restraint & seclusion would be covered as well. From the very beginning Ellen has maintained that the issue of safety is already covered by state programs, yet wandering deaths and R&S are still happening. We heard no concerns about restraint at the start. While raising questions is important, the types of questions being raised are a bit of a stretch. Children and adults are dying -- no one among the group raising questions has offered solutions, only objections. On a personal note, after being told by several health agency members to speak with Ellen about a medical code, I approached her at the October meeting. She wasn't patient enough to allow the full question and rushed off annoyed while sighing me a halfhearted answer. I'm a mom. My son has was found on a side road by a man in a car after he wandered from a school playground. He also flees when upset, which increases his chance of being restrained. I understand she's stressed and probably gets so many questions, plus she's a mom, too, but she's there to represent the community. I presented on the mortality issue that day and she wasn't willing to take a question. All we want are answers and solutions for our kids.
Katie raises legitimate concerns and insights based on the behavior and responses of these particular members. If there's any bias, it seems to be among those who continually look out for federal funding as it applies to services, independence and self-determination. The main point here is that these individuals were appointed to look out for the entire community, yet the subgroup of children and adults who represent the highest number of fatalities due to external factors are being treated as an afterthought. Their safety and well being have been neglected and continue to be-
Posted by: LoriMcIlwain | February 03, 2011 at 08:32 AM
A point of information: Ellen Blackwell's son is profoundly affected by autism. She and her daughter have done an amazing job in giving him the opportunity to live the most meaningful life possible. He has also been sometime put into abusive living situations which his family has extricated him from at great difficulty, and his mother is right to be vigilant about issues of restraint.
My son, also significantly affect by autism, could easily be characterized as 'wandering' sometimes - he is 18 and learning to be independent in transit by using the bus. His ability to tell what his intentions are are so limited that in an earlier generation his caregivers would probably have wanted to restrain him, rather than granting him the opportunity to gain as much independence as he can learn.
With due respect, this makes it hard to believe your characterization as accurate, rather coming from a position of bias.
Posted by: Ben Dorman | February 03, 2011 at 02:01 AM
I only wish my daughter could advocate for herself like Mr Ne'Man does. Unfortunately, her regressive autism has robbed her of all expressive and receptive language, and has left her chronically frustrated by her inability to effectively convey her wants and needs. At age 23, she has never been home alone, she has no friends to share joys with, she relies on Mom, Dad and her devoted siblings for entertainement. For 5 hours a day 5 days a week, unless there is yet another snow day, she attends a program where she has to have a one-on-one for safety. She will dash through traffic if she sees a bag of M & M's in the display across the street.
All our windows are bolted to keep her from trying to get on the roof and we keep our house and car keys in a safe with a complex combination because she is an escape artist combined with an Houdini. For years, because she bolts, we have taken her out via wheelchair which appeals to her somewhat lazy side!
She was my perfect baby girl, ahead of all milestones, a talkative social butterfly until the summer of 1988 when at 14 months she became autistic- I am a neurologist, yet no expert believed me when I told them she had been normal up until that hellish period of 3 months during which she lost one word after the other and began crying at the most seemingly innocuous sound. She did prove to have CNS Lyme Disease, which struck simultaneously as her MMR. Months of IV antibiotics took away the fevers, the anemia and after several years, normalized the Lyme serology (Elisa titer was greater than 1:16,386 before treatment).....however she was left aphasic with countless sensory hypersensitivities.
I really cringe at the thought that one would recommend prenatal "genetic" diagnosis.....of what and for what purpose??
Abort babies who are normal until we create havoc in their immune systems....Boy are they missing the boat!!! And no, they do not listen and god knows if I have tried....One former colleague called me a "hysterical mother" because of "my ideas".
When I was in Med School in Brussels, our professors always emphasized the importance of good history taking in order to reach a diagnosis. For the past 23 years thousands and thousands of parents have witnessed and told the SAME SCENARIO, on how a child once normal received vaccines then began regressing. Sounds straightforward enough....Yet the medical establishment keeps on looking the other way.
So frustrating and disheartening. Meanwhile I am not getting any younger. Who will care for our children once we are no longer around?
Posted by: Marie-Anne Denayer, M.D. | February 02, 2011 at 11:14 PM
My child of nearly 8 is very high functioning, yet exhibits many of the same issues, such as elopement, scary pica (coins 'taste so good'), little to no sense of danger, sensory processing issues, and impulsiveness. I suspect not to the degree that many experience with nonverbal children (much respect to their parents). We've had to install several lock mechanisms to prevent 2 a.m. wandering, and running into the street is a constant danger. There is so much range--even within HF.
Posted by: HF mom | February 02, 2011 at 10:18 PM
Thanks, Katie, for staying on top of the IACC. Excellent as always.
Many of our children and adults with ASD have narrow needs -- critical needs. IACC feels like a Blood Sugar Disorder Committee where the Hypoglycemia folks are opposing urgent access to insulin for children with Diabetes.
We recommended that a safety subcommittee be established to give specific focus to safety covering everything from abuse and restraint & seclusion to elopement and bullying. We're grateful it was formed, but some members are unfortunately stalling progress. For wandering specifically, the ASD population and the Alzheimer's population are dying the same deaths, but our population cannot access the same resources and safeguards as Alzheimer's. Kudos to the IACC members who acknowledged this and advocated for our population to gain similar resources.
In terms of the arguments given by some members regarding independence and self-determination, federal disability orgs already give the larger focus to this. Here's the mission statement for the President's Committee For People with Intellectual Disabilities:
"The mission of PCPID is to provide advice and assistance to the President of the United States and the Secretary of Health and Human Services on a broad range of topics that impact people with intellectual disabilities and the field of Intellectual Disabilities. Undergirding [their spelling] the Committee's mission is the goal to improve the quality of life that is experienced by people with intellectual disabilities, by upholding their full citizenship rights, INDEPENDENCE, SELF-DETERMINATION, and life-long participation in their respective communities."
Here's the goal of a federal initiative receiving federal funds:
The overall goal of this project is "to establish a sustainable, evidence-based training system that enhances SELF-DETERMINATION training programs that lead to quality of life outcomes for individuals with developmental disabilities throughout the lifespan."
Here's the goal of another one receiving federal funds:
"A national resource and information center on the Autism Spectrum Disorder (ASD) and other developmental disabilities will be established. Guided by the principles of inclusion, integration, INDEPENDENCE, and SELF-DETERMINATION, the center will gather, organize, and make publicly available readily accessible, high-quality resources and information related to community-based services that support INDEPENDENT living and SELF-DETERMINATION treatment protocols that promote community-based experiences (e.g. education, employment, recreation, transportation, early intervention and child care), and evidence-based interventions."
There are many more federal orgs and initiatives with this same focus. I'm not suggesting these efforts aren't worthy -- we all want independence for our children. I am, however, wondering where the balance is. Our population deserves to be safe above all else, and those who are struggling and suffering deserve equal attention and funding. You're right, Katie, we need more compassion & common sense on our side. Children and adults with autism are dying -- that's all the research we need to take urgent action. It's irresponsible to step back and wait.
Posted by: LoriMcIlwain | February 02, 2011 at 09:20 PM
Thank you Katie for letting us all know what is happening at these meetings. I am parent of severly autistic 16 year old with severe behaviors non verbal, no safety awareness, elopement, and PICA with preference for items that are life threatening. The severly affected need to be represented in a loud way. How do we get our voicesat the table and heard. We need a different forum where action takes place for the kids and adults who need lefe long care to keep them safe and well. We live in constant state oh high alert to keep our son safe and to manage the next behavioral eposodes that are intense or the next dart into the street or the attempt to jump out of the car while moving. The lives of the severly affected need representation from family who live with this fear and worry or the people say it is not needed to spend a week or month in our shoes. We see documentaries on higher functioning but where are the documentaries on the lives of the most disabled by autism and what families need to o through to get something as simple as a door alarm. Thank you please let us know how can we get our voices at the table for all on the spectrum
Posted by: Jim | February 02, 2011 at 06:57 PM
I'm the parent of two, high functioning, sons with autism. I disagree that there is a disconnect between parents of high and low functioning parents. It's not a disconnect, it's failure to be compassionate, to walk a mile in someone else's shoes. So, for every parent of a low functioning child, who feels that parents of high functioning children don't care enough to try and see issues their way, let me apologize for those who've been insensitive. Just because I don't have the same problems as you, I still would support you and fight for you and your family.
As for these IACC members who don't attend, nit-pick, want to confuse the issues, and those who plain don't get it; shame on you. One day you'll have to be accountable for what you've done, and what you haven't done.
And Katie, thanks so much, for taking your time to attend these events and to report to us. Thanks for being our eyes and ears.
Posted by: Kim Davis | February 02, 2011 at 06:05 PM
I think all the IACC members were in the trial of the NoThinx vaccine discussed a few days ago in AoA...
Posted by: Anna | February 02, 2011 at 05:55 PM
Kym Grosso is right that "sometimes there is a huge disconnect between parents who have high functioning children and parents who have low functioning children." This disconnect is not confined to wandering. For instance, it is also present when the issue of children with severe autism (possibly) being abused by school personnel is raised. Some of them are likely to suggest that we talk to our children about what happened at school; they have no answer when parents of children with severe autism inform them that our child(ren)'s expressive language is much too limited to do so. It is readily apparent that at least some of the parents of high-functioning children believe that all children with autism are just like their child - which makes abolutely no sense, it is called a SPECTRUM disorder for a reason!
I am glad that this is not true of ALL parents of children who are high functioning. I hope more of the rest of them can educate themselves concerning what having a child with severe autism entails.
Posted by: Carolyn M | February 02, 2011 at 04:15 PM
Katie,
I don't know how you can stand sitting through those meetings! I don't know how Lyn can deal with being the lone voice of reason amongst a bunch of uneducated and ill-informed members. Seriously, I would likely be getting up and screaming at the group at their lack of compassion, understanding and concern for the most vulnerable children in our community.
Thank you for what you do. We need you, along with the NAA, SafeMinds, ARI, TACA and GR to fight for us!
Posted by: Judith | February 02, 2011 at 03:45 PM
I always read Katie's reports about IACC meetings when I know I have some chocolate on hand (GFCF, of course) because I need something to comfort me when I'm done. I realize that the inefficiency of government committees really shouldn't surprise me, yet this issue (wandering children) seems like such a no brainer that I will need an extra piece of chocolate to even begin to contemplate how the members don't understand the urgency here. Have they not watched their local news in the last few years? I start with an easy question because clearly they have no grasp of autism, but I would think just watching the news would be a clue. I can think of at least two stories locally and one did not end well and it broke my heart. I have an 8 year old son who is very high functioning, so we don't have to worry about him bolting or wandering. Yet I know he does not have a good safety sense and will impulsively run into the road to get his ball and doesn't always notice if we move away from a display in the store that he is engrossed in. We keep a Medic alert bracelet on him that would tell someone that he has autism so that his anxiety and lack of ability to effectively communicate at times, especially in a stressful, emergency situation would be explained. The IACC needs people who understand autism, care about our children, and genuinely want to help make their lives better, as well as the lives of future generations. It does not need people who just want to build their resumes.
Posted by: James' mom in MN | February 02, 2011 at 01:25 PM
Thank you for your reports of the IACC meetings. They are very enlightening and help parents understand what is happening (and not happening).
It is my feeling that sometimes there is a huge disconnect between parents who have high functioning children and parents who have low functioning children. If a person doesn't know what it is like to have a child try to leave the house and roam the neighborhood, it is hard for them to understand how the issue is so important. I would also agree to that if you are not a parent of a child of autism, there is no way you can truly understand what it is like....let alone if you aren't a parent at all. It is just something that happens when you become a parent.
I really appreciate reading your notes from these meetings. As others have said, it sounds frustrating.
Posted by: Kym Grosso | February 02, 2011 at 12:50 PM
MORE ON FISCHBACH
This video is out today:
Is Autism a Male Disorder?
February 2
http://bigthink.com/ideas/26735
Not only does he deny that there's been any increase in autism, everything about the disorder is still a mystery to him.
Who put the IACC together? It seems purposely created to know and do nothing when it comes to autism
Anne Dachel, Media
Posted by: Anne McElroy Dachel | February 02, 2011 at 12:24 PM
The IACC is a flat waste of time. As a federal advisory committee, by nature it can't accomplish anything meaningful or helpful to anyone, least of all the autism community. The autism community doesn't have time to sit and listen to these half-assed know-nothings spin their wheels and go nowhere. Children and their families need help now, they need protection now, they need educational and medical services now.
Ms. Wright makes an encouraging statement, "I would like to remind Dr. Francis Collins that Wendy Fournier, president of the NAA and representative of 14,000 families, Becky Estep of TACA and representative of 16,000 families and Jane Johnson president of the Autism Research Institute serving tens of thousands of families, are ready to take those public seats and commit to attending all IACC meetings." However, are these very capable and caring women going to attempt to gain those public seats? And if they were to acquire those public seats, would they be able to accomplish within the confines of HHS bureaucracy what it is the autism community needs to get accomplished? Or, is it time for the autism community to turn its back on the IACC and just try to accomplish what it needs to accomplish on its own? Certainly, it wouldn't be easy to do that but then again, I'm sure the founding of TACA, ARI, and Age of Autism were no easy feats, either. Yet, they are not only up and running, but are thriving. To be sure, nothing about autism, especially effecting real and positive solutions for those affected, is easy. But if anyone can get it done, it's certainly the people at the autism organizations I just mentioned.
As for Ari Ne'Man, "Ari Ne’Man is just 22. He is a brilliant young man. But he is not a parent and has never felt the awesome responsibility of parenting and protecting a child with a form of autism so disabling, so unlike his own. Ari does a great job advocating for the interests of his community but I think his intransience on this issue was both hurtful and unnecessary." By his own admission, he is autistic and it is possible that he is not able to be concerned about others who are more seriously affected by autism. He may not even be able to grasp that it is possible for those with autism to be more severely affected than he is. I do not doubt that he is brilliant in his own right but if he indeed does have defecits regarding the understanding of the health and welfare of others, he has no business participating in this discussion. He should, though, definitely advocate for himself and for others who do indeed want him to be their advocate. As for the more severely affected, children and adults, who are cared for by families, experts should be listening to their families... those who have direct contact with these individuals and an understanding of their needs.
Posted by: Concerned Mom | February 02, 2011 at 12:07 PM
OH, Katie if only you too could be on this board; it would not be so lonely for our brave Ms.Redwood.
Thanks for going (I am sure getting to one of these meetings is not easy) Then thanks again for sitting through it for six hours, and then to be made mad and not being able to speak out at these people - is tough.
But thanks again.
Posted by: Benedetta | February 02, 2011 at 12:01 PM
Dear Katie, thank you for you ongoing perseverance with the IACC. Honestly, I don't know if I could attend these meetings without screaming. Your patience and ability to report back to us about the goings on is so valued. There is nothing complicated or controversial about wanting to keep ASD kids from walking into harms way. This committee's ability to make something so common sense and so fundamental, complicated just speaks to their lack of ability or desire to get anything real done for our children.
Posted by: Alison MacNeil | February 02, 2011 at 11:41 AM
The mentality that justifies the "termination" of Down Syndrome babies and dwarves is the same one that will eventually lead to the euthanasia of the severely autistic (useless eaters, life not worth living, etc.).
Posted by: Theodore Van Oosbree | February 02, 2011 at 11:23 AM
Do tracking devices exist that do not use electromagnetic transmitters?
I questioned one vendor of such a device at Autism One this year and he had absolutely no idea that electromagnetic fields were a contributing factor to our kids issues.
I have empathy; our wonderful 4-year old non-verbal got out one time. We were lucky, he was still in sight from out front door.
If there were clean\safe devices available I would help the push.
Posted by: Mike | February 02, 2011 at 11:19 AM
A final thought is that these committee members should have to visit a special education classroom where they would see that in one of the classes I work in, we have to have a special lock system on the door to prevent "bolting" and we must hold hands of certain children in the halls (4 out of 7) or they will run (to and from trips to the bathroom, playground, gym, music room where they are encouraged to join with other children in the school). It is very frightening to lose a child and not have them respond to their name being called. We even utilize walkie talkies at all times.
Posted by: jen | February 02, 2011 at 11:15 AM
o.k. I got so mad a after reading "stepping back and doing more research on wandering deaths" I couldn't even read the rest before responding. That is the HEIGHT OF IGNORANCE. What you guys have to face on a daily basis is tough enough and then to have this kind of treatment of life and death issues at a meeting like this is INSANE. Maybe someone like Nancy Grace would listen to your lifesaving, more than reasonable plea.
Posted by: jen | February 02, 2011 at 11:04 AM
Funny you should mention Gerald Fischbach. I recently watched a video of a panel of doctors discussing autism called, Is Autism an Epidemic http://bigthink.com/ideas/26705.
Fischbach was one of them. Here's what he had to say:
Dr. Gerald Fischbach of the Simons Foundation : “No it’s not an epidemic. I believe it’s greater recognition, greater clinical acuity, more available resources. Mostly, a broader definition of what we mean as it blends into a normal population on the one hand and the low end of the spectrum, the intellectually impaired on the other. As the diagnosis of autism is increasing, the diagnosis of mental retardation is decreasing. More and more on the high end, more children who were just a little bit off, who ordinarily you would not single out, now being described as perhaps Asperger’s Syndrome or on the high end of the autism spectrum. So I don’t believe there is an epidemic."
"You know the first paper written on autism was in 1943. Autism existed way before 1943, but in terms of the stigma, these children were called queer, idiot, …No one had a name for them until one man, Leo Kanner, in 1943, gathered a group of children and said there’s something common about these children. And it’s a well-defined entity, but the definition has………………."
If this is the type of "expert" addressing autism on the IACC,
I see no hope for anything being done for a single child.
Anne Dachel
Media
Posted by: Anne McElroy Dachel | February 02, 2011 at 10:08 AM
I wish they would focus on ways to improve brain function of kids with autism and preventing autism than tracking devices. But, in all honestly, I feel the less these people do the better.
I find it interesting that the only "solution" by our "medical" profession for down's syndrome is abortion. According to
Dr Wallach down's syndrome can be created at will in the laboratory by preconception zinc deficiency. Gee, wonder what's causing the zinc deficiency? I know this is not a discussion of abortion but if that is one of their solutions for down's, what will they come up with for autism? Maybe they should just sit around talking than coming up with one of their "solutions."
Posted by: Mary | February 02, 2011 at 09:51 AM
My child bolts so wandering is a big concern from me. We've already had some very close calls. My town which is surrounded by the ocean, has no lifesaver programs though I did talk to the police and fire deparment on my own about my son's behavior.
Unfortunately, the IACC meetings are probably not the best venue for bring this message. Everyone seems to have their own agenda and things do get muddled.
Maybe we parents need to lobby a congressman to sponsor a bill (named after one of our kids) that makes public education on child wandering a priority and funds programs that promote measures like training law enforcement, SAR teams, project lifesaver and build a fence programs. We could have a congressional hearing where parents can testify.
Honestly the IACC meetings seem like a waste of time. Thank you for sitting through it Katie.. it sounds very frustrating.
Posted by: Sarah | February 02, 2011 at 09:02 AM
Thanks for this report. The IACC meetings are boring and unproductive in the extreme. As for self-determination and safety, my son who is now 48 years old has gone missing too many time to count since turning 22. He now wears a GPS bracelet and has a cellphone with GPS.
For a blessed 10-year period, from age 29 to 40, he was an inpatient at Westborough State Hospital in Massachusetts, and he would never have run away from the wonderful programs available to him there. At Westborough State Hospital he had a workshop job assembling picture frames and bird feeders for which he was paid. Most important for him was to see his work for sale in stores.
For the past 8 years he has lived in a "community" group home with alarmed doors. Two years ago he climbed out a window in the middle of the night and was missing for 7 weeks and 2 days, finally encouraged by two police officers in Harvard Square to be taken to a hospital for evaluation. That mental health unit has since been closed and my son is back in the group home.
It would be interesting to listen in on a conversation between my son and Ari Ne'eman. Ari might come to realize that it is not that chic to be autistic.
Meanwhile, the "strategic plan" is such a dud. It's focus should be research on the underlying neurological injury that prevents normal development of language and social awareness, and environmental (not genetic) causes should be a priority.
Posted by: Eileen Nicole Simon | February 02, 2011 at 09:01 AM
On the subject of wandering and lack of perception of danger:
'Germ-free mice appeared to be more exploratory than mice with normal microbiota, venturing farther and to more areas of the space provided. Germ-free mice also spent more time in the light and engaged in riskier behavior in the maze, indicating they suffered from less anxiety than their microbe-filled counterparts.'
R. Diaz Heijtz, et al., "Normal gut microbiota modulates brain development and behavior," PNAS, doi/10.1073/pnas.1010529108, 201
http://www.pnas.org/content/early/2011/01/26/1010529108
Read more: Gut microbes influence behavior - The Scientist - Magazine of the Life Sciences http://www.the-scientist.com/news/display/57968/#ixzz1CoFe8z41
Posted by: GH | February 02, 2011 at 08:59 AM
To take backwards steps breaks my heart. TannersDad Tim Welsh Director Mason Allen Medlam Foundation for Autism Safety.
Posted by: TannersDad Tim Welsh | February 02, 2011 at 08:43 AM
Thank you for attending and updating us. It's very discouraging, but we do need to know what is going on.
Posted by: 4Bobby | February 02, 2011 at 08:43 AM
This is beyond discouraging. I am facing a brick wall in my own community. My kids have a tracking device because of a very kind neighboring community that allows us to participate. My city's mayor told me one year ago that we he supported a tracking/device system and would commit and get the process rolling within 30 days. That was one year ago and still nothing.
Posted by: Dana Read | February 02, 2011 at 08:41 AM
Katie, thank you for attending these meetings and reporting to all of us. Honestly I don't know how you keep your cool while there. I'm afraid I wouldn't be ble to keep my mouth shut...it all seems like an total waste of something that could have been wonderful for our children. Has this committee accomplished anything? The thought that they had to debate safety for children, insane!
Katie, mom to jack, nick and Ryan
Posted by: Katie kelley | February 02, 2011 at 08:00 AM
Frankly, they prefer our kids dead.
Posted by: julie | February 02, 2011 at 07:03 AM