Has anyone out there had serious problems with an Autism Speaks advocate?

Question

I went to an IEP meeting and the advocate was horrible. Right off the bat she appeared angry and hostile. She accused many people at the table of doing things over which they had no control. It appeared that her basic tactic was intimidation. The parent called me after the meeting to apologize for the woman. She was a horror story and bragged about how long the meetings that she was in took. Apparently she was in one that extended over four days and 26 hours. If she really cared about kids, why would she want to keep teachers out of the classroom that long? I think she is in it for power and attention.

Answer 1

Autism Speaks was founded by Bob and Suzanne Wright; Bob is the chairman and CEO of NBC Universal and the chairman and executive officer of General Electric. He and his wife, have had a public falling out with their daughter who is raising their autistic grandson as evidenced by their daughter's appearance on Oprah in April 2007 regarding this public falling out.

Allison Tepper Singer, Vice President of Communications for Autism Speaks, discussesd how she felt when she took her child to a regular school which was going to accommodate her autistic child in a special education classroom with 5 other children, one teacher and two educational assistants. She said. "[quote] I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools [end quote]."

It was only because of her other child, Allison Tepper Singer said, that she didn't go through with the murder-suicide.

Autism Ontario pulled an Autism Speaks very video from their website months ago after discussions with their board members and members of the autism community precisely for its negativity towards autism and autistics.

I have heard from people "on the inside" that Autism Speaks' goal is to fund genetic tests for autism to encourage people to abort those who have autistic genes in utero to eliminate autism from the world. Simply having autistic genes does NOT mean a person will present with autism.

It should be noted that the PR firm who designs Autism Speaks' ad campaigns (BBDO) is the same one that has created the defamatory Ransom notes campaign in New York in which the ads claim that people are "Held Hostage" to Autism and Asperger Syndrome.

http://www.aboutourkids.org/files/pages/assets/NYTimes_PSAarticle_12-14-07.pdf.

The ads make it seem as though ALL autistics and AS people are helpless idiots and that by paying for services, they can be cured.

Autism has been proven to be genetic in origin and cannot be cured.

I run forums for over 700 Aspies, and one forum for parents of autistics. All are firmly agreed that Autism Speaks is a poor entity to be "advocating" for autistics.

My own letters to Autism Speaks were replied to with contempt and derision, so I know that they are open to no other opinions but their own.

Answer 2

As a person who works in a school, I shouldn't say this but I suggest that you go with Bob's answer. As for the raging debate about if Autism is an educational or a medical diagnosis, the answer is its both. If you want a medical or clinical diagnosis of autism, you should have a comprehensive (and muy expensive) evaluation done by a psychologist who specialzes in this area. The evaluation should not be a 10 minute waiting room eyeball of the child but a thorough evaluation (cognitive ability, sensory aspects, speech, language, behavior, adaptive behavior). The best evaluation would also include the Autism Diagnostic Observation Schedule which sets up social situations designed to elicit behaviors common to children with autism. If you want an educational eligibility, you could let the school do the evaluation. The chances are, it will not be as rigorous or thorough. Most school psychologists are not trained specifically in diagnosing autism (though there are some like me who are). The up-side is this evaluation would be free. Clinically, it sounds more like your son may have asperger's syndrome instead of the classic autism because his language is well developed. The criteria for that is that includes difficulty with social interaction and some type of repetitive behavior and restricted interest. Bottom line, I would let the school do the evaluation because it is free. It is likely they will eyeball your kid and use a few checklists. If you do not feel comfortable with that, then I would refuse to sign the IEP paperwork and insist that an independent evaluation be done (at the school's expense). Use the advocate as well.

Answer 3

There are two types of adovcates really...the attack dogs and the negotiaters. Most parents will at one point in time, need the services of both! It sounds as if you got an attack dog..the one you want when you have appealed, yelled, cajoled and tried being reasonable and are on the verge of hiring an attorney when you may have only needed a negotiater. I would certainly contact the office the woman was from and let her know that from your standpoint, the woman's tactics made the meeting less successful than it would have been otherwise. Groups that supply advocates need to hear feedback not only from parents but from the educators the advocates were supposed to interact with. I can bet that if she has acted like this in the past, the program has heard about it and will handle the issue.

Answer 4

I haven't used that sort of advocate before, however, my guess would be-experience. I have been to several IEP meetings where there are a panel of 9+ teachers and me. I have been bullied, purposefully ignored, lied to, patronized. If this advocate has been at it for a long time, I would say experience has taught her that unless you put down your foot, draw the line, whatever, the child and the parent will be discounted. It has been my experience, particularly at the middle school level, that the child's best interests are discounted, and lieing and trickery to the parent is considered appropriate means by which the school does not have to meet their obligations to that child. As far as how long the meetings go etc, this is often just as much the teacher's fault as the advocate/parent. When you come to an empasse what else is to be done? Should that one child's needs not be met? The teachers at anytime could have just said, "we are clearly not coming to an agreement" and offered mediation through the state or other agency. That they let it continue that long is not the fault of the advocate, who is trying to help a child succeed.

Answer 5

Dear Miss Behavior,
I am both a mother and a teacher. I have been on both sides. My daughter has a learning disability. I requested to have her tested and had both my principal and the principal at the school where my daughter attended threaten me. The school wants the medical profession to take care of things and the medical wants the school to take care of things. As a parent I felt like the school was totally against me which they were. I have had to fight for every bit of services. Services cost money and they don't want the added case load. The advocate in your case was rude. I have found that it is you against the school and they are not there to help. They are out to get out of doing as much a possible. As a teacher I tell parents when their is something wrong with their child. I also encourage them to ask for their children to be tested. I feel it would be hypicritical not to let them know that their is help out there. However, I let them know they will have a war not a battle on their hands. I understand why parents get advocates and attorneys. In my district they could give a _____ about the kids. My child's IEP was overdue by a month. I let the school know and they gave me attitude and the principal called my principal to complain that I was holding them accountable. She then made threats concerning my job. Having a child with learning disabilities is rough and when the school distrcit is against you too that just adds insult to injury!

Answer 6

As a special education teacher, I have had several horrible experiences with advocates. I have had advocates bully me, question my credentials, be rude and condescending, and had advocates who had no idea what was developmentally appropriately for the child, did not have their best interests in mind, and only wanted to punish the school district. I have also worked with advocates who were intelligent, obviously had done research on the child, asked good questions, and made positive suggestions that helped benefit the child. Some have had great ideas for goals that we simply did not think of. These advocates were fantastic to work with, and all advocates should be this way. Unfortunately, in my experience, so many parents think they need to use force to get what they want.

Answer 7

I have had experiences similar to yours with advocates. While I understand the need for advocates on occasion, I really do feel that these people are often unethical or not very bright. Often times these people have had children's with disabilities that were treated unfairly and so they are angry with the entire educational system and need a way to take revenge so they do it on other families behalf. I have also heard purposeful statements about advocates intentionally dragging meetings out or trying to create additional meetings in order to charge the family more money. I have seen these same advocates give parents dirty looks in meetings when the parents agreed with the district and not the advocate (isn't the advocates job to make sure the parent's voice is heard, not their own). Usually the families are angry and frustrated so they like to see this hostile person make the school district professionals squirm. They act as experts in all related educational fields and make our jobs difficult. They often don't see the forest for the trees as I have been in arguments with these people as they nit pick goals because they want it to say classmates instead of peers or 85% instead of 80% for the criteria or they want things that are not developmentally appropriate. Make requests that are not reasonable or professional and encourage parents to not sign and use the attorney or lawyer to sue the district that they work with collaboratively to try to generate revenue. I have actually heard many parents say they get more bang for their buck going straight to the attorney and not using an advocate, and in my experience the attorney's tend to be more professional and helpful. My advice to parents who really feel they need this level of support or protection with your district is to hire and attorney who has an ethical code and will do more for the same money than hiring an angry parent with an ax to grind.

Answer 8

I believe that special education advocates should be regulated by a certifying body. To hold oneself out as an advocate for the legal rights of a student with a disability, one needs no particular education, no minimum knowledge, no adherence to a code of conduct. IDEA and related laws are very complicated and even attorneys must regularly research case law and related statutes, and analytically apply the facts of a case to the law. An advocate is performing the same job, but with no external check on his ability to do so. Advocates provide an alternative to an expensive attorney, but a frighteningly inadequate one. Compare with others who work in a field where the ultimately responsible professional holds a doctorate and a license: paralegal, paramedic, nurse, physician's assistant... All require their own initial training, certification or licensure, continuing education, and supervision to practice.

Answer 9

I'm sorry to say my experiences at IEP'S have been very similar to the first poster's. So similar in fact it is uncanny and verifies that this is likely quite common. That being the case I have to say the advocate was probably just doing her job correctly.

addendum: I agree with jade 645 on the issue of going right to an attorney. In our case whenever we applied the threat of legal recourse all the BS from the school district stopped and all of a sudden the resources we requested, and were told were unavailable, appeared out of nowhere! It was actually quite comical watching them backtrack and trip over their words.

Answer 10

My autism advocate wants to add everything to be done at school also. I stress to her that I am concerned with him learning there also. She wants to attend and I am holding off I am worried she will create more stress on my son befor I have behavior undr control. If I do have an issue with the school I just mention maybe I could ask "advocate " to come in and see what is causing his reaction. Things are more relaxed after that is said. They fear them/