Severe Autism: When There is No Answer

This video was prompted by a discussion I had on an autistic self advocacy Yahoo Group. For a long time, I have been concerned about what is presented as neurodiversity in the public. I recently jumped into a discussion on parental grief and what it means to parents to grieve for the lost opportunities and that much of that grief is centered around a sense of powerlessness to ultimately leave their child with the ability to be independent and live a happy life when the world is so cruel to people with disabilities. I'm one of the few parents on this Yahoo Group board and I felt that I could add something useful to the discussion. Many were confusing parental grief with contempt and resentment for their children when that is not what parental grief is about. I assumed that my position as both an ASD person and a parent would give some added benefit to the group discussion and clarification of what parental grief is in the case of ASD. I assumed that my experience would be a bridge of understanding but what I found was that the members of this group, largely made up of people with Asperger's Syndrome, some diagnosed and some self-diagnosed, insisted upon clinging to the belief that when a parent grieves, they are grieving because they had a child that had a disability and they wanted a different child. In my view, this is totally incorrect. What parents are grieving is lost dreams they had for their children, dreams carried throughout their lives on the anticipation of becoming parents. Parents grieve of the difficulties and obstacles that would be put in the path of their children, some of which they are powerless to change. Grief is a natural human response to something lost. What is lost are those things we always wanted for our children namely that they are safe, happy and independent when we are gone and no longer able to help or protect them. So, what was the response you ask? I was accused of being prejudice against my own son, I was compared to a knife wielding homicidal person and I was accused of child abuse. What is more remarkable, is that the leaders of this group, some very well known and one that was appointed by the President to serve on the Council for Disabilities remained silent and allowed me and another autistic parent to be attacked and accused of these things viciously. For me, this is the death of the idea of Neurodiversity. If we can't even agree on a set of facts, there is no room for growth and understanding and that this group is not much interested in empowering autistic people but much more interested in supporting an ideology based on some very faulty assumptions. Parents are always the bad guys if they express any human qualities such as grief. What the group essentially was trying to do to me and another parent is to disempower us by attacking and insisting we were saying something we were not saying.
There is more to this description but I ran out of allowed words. I'll make a follow-up to it later and add the additional context and discussion.

Here is Jamey's mother's channel: http://www.youtube.com/user/kgaccount

Category:

Nonprofits & Activism

Tags:

• judge
• rotenberg
• center
• severe autism

[AnElephantThatPaints]

Just so you know, most neurodiversity proponents NEVER said they were against treatment, even for aspergers. I agree that ASAN should prioritize its goals better and send more of its funds towards direct assistance to autistics, rather than trying to cleanse the internet of hate-speech. Though I still think it matters if people are advertising autism the wrong way. That can motivate parents to take the wrong path just for a quick fix, when that would only make it worse.

[christschool]

AnElephantthatPaints, I don't think I made the claim ND proponents said they were against treatment, but they did and do say they are against a cure. Jamey needs a cure, no? I think he does and I think if he could ask for it, he would.

If he was capable of asking for a cure, Jamey, by the rules set forth by ASAN, could not join ASAN. This is what is wrong with the current state of autistic advocacy, among other things in my opinion.

[PCDWestby]

What Yahoo group is it? I am a neurodiversity proponent, and would not compare parental grieving to "knife wielding". Parental grieving is understandable. Alarmist and misleading statements are not: If the neurodiversity proponents you mention, including Ari Ne'eman, are not actually members of the group you are talking about, you can't blame them for not coming to your defense.

[christschool]

@PCDWestby The comment was made by Kassiane on the ASAN Yahoo board. Ari Ne'eman was made aware of it and refused to do anything about it. But, its really water under the bridge. I wasn't getting anything out of being a member of that board. Its far too Asperger's centric for me.

[christschool]

@PCDWestby You are also a person on ASAN's Yahoo board that scoffed at my suggestion to add a person with LFA to ASAN's advisory board claiming that ASAN shouldn't support LFA 'affirmative action" as you put it.

[CJEB4]

@thesenamesaretaken I am not chelating my son because "he has autism" lol. He is full of lead and aluminum and chelation is helping him have bowel movements, communicate and understand. This is a very good thing when you are as severely affected as my son, maybe he was originally misdiagnosed?

[thesenamesaretaken]

@CJEB4 I would strongly recommend looking into how useful chelation "therapy" actually is for sufferers of autism.

[PinkPunkyKat]

@CJEB4 Just becuase he is low functning, it dosen't mean he should be thrown away and forgotten about. 

[CJEB4]

@PinkPunkyKat you would be surprised at how many "Jameys" there are in this world, my son is one like him and it's heartbreaking that I can't help him or find many people willing to say that our children need a cure.

[CJEB4]

@christschool My son is just like jamey only younger, I know in my heart that he would BEG for a cure! He is in pain everyday of his life and because of that he has serious SIB"s and cries loudly a lot. He had 6 months of chelation therapy (we stopped because it's over $300 a week) and has since started to shake his head yes and no, not always appropriately but the fact that he is starting to mimic this when asked a question tells us a lot. We will be starting treatment again in the spring.

[PinkPunkyKat]

Jamie is the exception.

[fluffyblueberry]

I think this is a very important film, I really related to what you said and agree with you. Thank you for posting.

[momofxantyce]

Wow, I really appreciate this video. I had seen some of your prior videos and it always bothered me when people assumed all ASD people wanted acceptance. When my son was lower functioning, I thought the ND crowd were a bunch of idiots. Screaming, vomitting, not talking...none were desirable to him or me. The older and higher functioning my son becomes, the more I understand what they are trying to say. Unfortunately not all kids improve like yours and mine. My heart goes out to Jamie for a cure.

[smsorour]

well said, you tell it like it is