Essays academic service


The courage of john elder robinson in dealing with the disease asperger syndrome

November 13, 2013 I resign my roles at Autism Speaks It's been two years since I wrote this essay, as I sat on a plane overwhelmed by the latest outrageous commentary from Autism Speaks.

John Elder Robison's new book takes a fresh look at autism

But will the organization change in a meaningful way? Only time will tell. Meanwhile we are on to other challenges, like building neurodiversity on campus and developing high school to work transition programs.

  1. The collection of differences are called the autism spectrum.
  2. We do not like hearing that we are defective or diseased.
  3. Some people want a little help, while others face major challenges. Robison amused himself and vented his frustrations with science experiments and vandalism.
  4. From that beginning, J E Robison Service grew into one of the most successful independent repair businesses in New England. At the same time, I realized the wider world needs us; and they need help understanding how to accommodate us and help us fit in.

However, there is a vast gulf between the tone of Mrs. I believe we see the situation rather differently. As an autistic person this is a time when I must give primacy to my own life experience and feelings. I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism — as a neurological difference — confers both gift and disability on everyone it touches.

  1. If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion.
  2. Cathy Steere portrays her fears, self-pity, depression, and grief, as well as their courage, persistence, and patience. First, the growing awareness of a problem.
  3. The opinions expressed here are his own. Some of them had some pretty strange ideas, though!

Many autistic people are aware of this dichotomy. Consequently, I support the idea of changing society to make it more accommodating for people who are different. I also support the idea of developing therapies, treatments, and tools to relieve suffering and disability from both autism and the conditions that accompany it for some people. I know how hard life is for some on the spectrum, but I also see the gifts other autistics bring.

Both are touched by autism, and it's part and parcel of who we are. That's why we face such a difficult challenge, to keep the gifts while relieving the suffering. It's immeasurably harder than simple disease fighting. At the same time I realize people are people, and if I act like a jerk, I will be treated as one. I understand I have a responsibility to learn how to behave in ways others will find acceptable or even appealing.

At the same time, I recognize that society must be there with the tools to fulfill its part of the bargain. Not everyone wants help with disability and suffering, and I support their right to exist and be accepted just as they are. The point here is that there are many ways autistic people can choose to live their our lives and all are valid and deserving of respect.

Some people want a little help, while others face major challenges. As a progressive society I argue that it is our duty to develop ways to meet the very diverse range of needs our community has. She says things I would never say to people with autism and cannot in good conscience stand by. Given the courage of john elder robinson in dealing with the disease asperger syndrome role as leader of the organization, I am afraid it is my signal to exit the Autism Speaks stage.

I share with you the following letter, just delivered to Liz Feld, president of Autism Speaks. For the past four years I have worked very hard to defend Autism Speak after a series of public relations missteps; beginning with the I Am Autism video. I have tried to help Autism Speaks staffers understand how destructive its messages have been to the psyches of autistic people. We do not like hearing that we are defective or diseased.

We do not like hearing that we are part of an epidemic. We are not problems for our parents or society, or genes to be eliminated.

We do have problems, and we need help. Some of us need counseling or training, while others have significant medical challenges. We also need acceptance, and support. There is a great diversity in our community, which means we have a very broad range of needs. Unfortunately, the majority of the research Autism Speaks has funded to date does not meet those needs, and the community services are too small a percentage of total budget to be truly meaningful.

We have delivered very little value to autistic people, for the many millions raised. I stayed on board because I felt the fundraising power of Autism Speaks could be directed toward research and services that would be truly beneficial to people living with autism today.

I felt the occasional public relations gaffe was tolerable if we began delivering therapies that would really help our community. I expressed my views to that effect in public, at science reviews, and to Autism Speaks staff. Recent public statements from Autism Speaks have shown that my ideas have not taken hold among top leaders, despite my best efforts.

This latest op-ed piece is simply not defensible for someone who feels as I do, and I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.

Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target. The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its 1 priority, with no exceptions.

The priority cannot be autism parents, or autism grandparents. No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view. Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults.

And the fact is, that is the majority of the autistic population. Consequently, I have decided to resign from the Science and Treatment Boards, which are my only formal connections to Autism Speaks.

Autism Speaks has a lot of potential with its media presence, public name recognition, celebrity connections and fundraising power. It could do a lot of good, if directed differently. I hope that happens one day. If you want to talk about making meaningful changes within the organization, giving people with autism a substantial voice in your governance, and shifting your focus to one that would truly deliver on the promise of the funds raised, I would be open to the discussion.

The opinions expressed here are his own.

There is no warranty expressed or implied. While reading this essay may give you food for thought, actually printing and eating it may make you sick.