Autism Speaks

I'm sure this will be an unpopular post, especially among my autistic readers. Guess that's okay, it wouldn't be a good blog if I only said things people like.

Other autistics have questioned why I support Autism Speaks, both through Twitter and e-mails. I believe they deserve an answer, that took some thinking to phrase it correctly.

Autism Speaks has a rocky history with autistics, after all they used to be a group with the name of "Autism Speaks" while not having any actual autistic members. However, I honestly believe they are trying to change for the better, repair the relationship. They added John Robison, a well known autistic and author. As well as other steps and gladly answered an e-mail from me.

Here is the contents of the e-mail Q&A:
How do you think involving Mr. Robison in Autism Speaks has affected your organization?
John Robison joined Autism Speaks’ Scientific Advisory Board and Treatment Advisory Board earlier this year. He has been a great asset to our organization and in addition has posted some very insightful blogs on both our site and his own popular blog. John expressed his feelings about why research is important and what it means to him and the autism community – his insight has been great. We continue to be very pleased to have him onboard.

Has the response been overall positive or negative?
Overwhelmingly positive


What kind of actions is Autism Speaks planning or already doing to greater include people on the Autism spectrum?
Our new blog and facebook page has really opened us up to encouraging people to comment on all aspects of our mission. In addition, we invite family members as well as individuals on the spectrum to submit stories. John joined us this year at IMFAR and brought Wrong Planet’s Alex Plank, an adult with Asperger. They interviewed scientists, parents and organizers to learn more about the science. Alex has been posting portions of these interviews on his site. In addition, college student Kerry Magro has been hired by us to blog about events related to his major. He is on the spectrum as well and wrote about the Autism Speaks 400 in Dover, the NBA Awards event and many more. This has been a very natural progression for us as we hit our fifth year and it’s been very exciting to see this new collaboration within the community.
(e-mail exchange with Dana Marnane from Autism Speaks)

Are they perfect? No, of course not, they are a group of humans. I've yet to meet a perfect human. However, I think it would be in the advantage of the autism community to work WITH a large, well known group that seems to be reaching out to people on the spectrum. Realistically, I don't picture a parent of a nonverbal kid being very comfortable in a GRASP meeting or even relating much to it. However, they are likely to hear of Autism Speaks; because they do a lot of advertising. I'd really rather a parent go to them than go Google "autism treatments" and feed their kid some random snake oil. Or get so frustrated they do something they regret.

Autism Speaks is not my favorite group. I'm lucky enough to have a well developed Autism Society nearby who I can easily call or e-mail and get support from. (if you're in the Tidewater area of Virginia, that would be
Tidewater ASA ) However, I've heard from parents in other parents of the country that don't have a local Autism Society that they feel they can go to. (yes, my favorite group would be the ASA)

Autistics need to be a bit more tolerant of Autism Speaks; they aren't trying to be an enemy or exclude us; in fact they are trying to work with us.

(Comments are welcome, please refrain from cursing)

Interview with Liane Willey

I was delighted that Liane Willey, author of the book Pretending To Be Normal agreed to do an interview with me for my blog. Liane is a wonderful women on the autism spectrum who works to improve the lives of other families living with autism.

1) How did you handle finding employment and keeping it? Are there some tips you could share with other people on the Autism spectrum (and their families helping them) struggling with job issues?



It was very difficult for me to go to job interviews, but I forced myself to do what had to be done. Namely, I made resumes, practiced having interviews with myself in the mirror, and I made sure I had a nice outfit to wear to the interview so that my appearance was neat and appropriate. I cannot say this was easy. There were times I would put off going to the interview for days on end. The key to making myself go was to find a job I was qualified for. When I was 16 I was only qualified for fast food restaurant work so I applied, and got a job at, McDonald's. I applied for my position as a professor after I had my doctorate degree. I did not get every job I applied for and I was often terminated soon after the job. By the time I was in my late 20s, I knew teaching was something I was good at, so I decided to pursue only jobs where I could monologue or teach. My advice is simple: find what you're good at, pick an area you enjoy so you will stay motivated to do what it takes to obtain and keep the job, study hard and gain as much educational or practical experience as your budget will allow for, get experience even if it is as an intern or volunteer, and practice interview skills. After you do get a job, work with a job coach or counselor to make sure your social skills are of the sort your new career will demand. Finally, there is no shame in any job. I often took jobs below what I thought were my academic and experience level, but I learned something in each job, so no job was ever a waste of time.



2) What is the biggest issue facing the autism community today and how would you like it handled?



This is a tough question to answer. If I have to pick one it would be to reach the ASD affected minority, low socioeconomic and elderly populations with both ASD awareness and support programs. I would love the media to join forces and broadcast free ASD educational programs geared toward teachers, caregivers, families, and individuals. A network devoted to nothing but special needs would be great and our ASD community could have a strong voice and presence in this programing.



3) Do you have any tips for managing autistic mannerisms, like rocking, spinning objects, etc.?


I never try to break a stim or habit without having something in mind to take its place. When making a replacement habit, I try to find something that is very similar, but that may look less like a stim. For example, I like to rock, but I rock side to side, rather than forward and backward because it looks more natural- like a mother rocking a baby. And I still afford myself plenty of opportunity to stim as I wish, in private. Private may mean the back of a grocery aisle where there is no audience or a public bathroom behind the closed doors of the stall, but usually it means in my own home.



4) What can people on the spectrum and their loved ones do to keep them safe? How can a person on the spectrum figure out if a situation is "safe" or a person is "safe"? What are some red flags that a situation is bad?


I am not sure a person on the spectrum will ever be 100% able to stay safe and avoid bad situations. Our poor theory of mind and our inability to read non-verbal communications and judge hidden social curriculums make it nearly impossible to always judge a person's intent or a situation's risks. I do know that it is comforting for me to have a trusted person or two I can call the moment I feel like I might be close to something unsavory. I give myself permission to call one of my trusted friends the moment I feel unsafe. Regrettably, I still walk into bad situations, so I would like to refer readers to autism safety expert Dennis Debbaudt. His contact information is http://www.autismriskmanagement.com
Email: ddpi@flash.net
Autism Risk & Safety Management now on FaceBook. Join us here:
http://www.facebook.com/pages/Autism-Risk-Safety-Management/247829751467?ref=mf


5) When you're close to "melting down"; how do you handle it?

First of all, I had to learn by trial and error and many years of paying attention to my reactions, what would make me break down and how to avoid it. Now that I know what my personal buttons are, when I see the buttons are about to be pushed, I tend to go to the darkest part of my closet, close my eyes, shut out all noise, and concentrate on my breathing. If I don't' get myself out of the on-coming storm, I will surely get caught up in it and then I have to ride it out with either extreme amounts of anxiety, physical illness, or lots of tears.

6) What are some do's and not do's of dating? Is there any cautions you have? And what can a parent/caregiver do to help a person on the spectrum interested in dating?

In my perfect world, people on the spectrum would only date people they have been fixed up with by friends and family members! However, there are places and situations that are safer than others for making friends and building relationships. For example, don't toss a person with an ASD to a bar and expect the evening to go well. Family oriented centers like the YMCA rock climbing club or a local bowling league tend to be safer bets for meeting people who do not have ulterior motives in mind. That having been said, there are cruel people everywhere, so the person on the spectrum has to have a solid understanding of what constitutes good and inappropriate behavior and how to handle such behavior if it comes up. Remember that dating will often turn into something interpersonal, so don't underestimate the importance of sex education. Be direct in your discussions, leave nothing out. Discuss diseases, how they are acquired, pregnancy, the urban myths surrounding all the above, and the importance of knowing "no means no". Social coaching is a must in this area and at some point, I would bring in both males and females to talk as freely as possible about their issues, concerns, questions, etc. Let the person on the spectrum do as much self-analysis and questioning, and as much self-advocating and understanding as they can.

7) What is something about Autism that you wish everybody would know?
Yes. I wish people knew that everyone who has autism has a wonderful story to share. If people took time to really learn to listen to and learn from their autistic associates, I bet they would be surprised and delighted with what they learned from the person with autism.



8) Is there something you would like to tell parents/caregivers out there?

Take time for yourself. Shed any guilt you may have. Every parent/caregiver has moments of guilt over any human they tend to, so just know it's normal. Laugh as often as you can. Pick your battles. Know that things get better. Never underestimate the gifts your person with an ASD has. Keep the bar just high enough, and take care not to make it too low. Remember, the support you give is incredibly important and life saving. Without you, I shudder to think where folks on the spectrum would be.

Goodbye, Rain Man

Laurence Kim Peek
Nov. 11, 1951 - Dec. 19, 2009
Kim Peek is best known as the inspiration for the character Raymond in the 1988 movie "Rain Man". Although the character in Rain Man is autistic, it was later determined Kim Peek is not autistic. He had savant syndrome as well a malformed cerebellum and missing corpus callosum. Kim Peek's memory amazed many in that he memorized over 10,000 books (including phone books) as well as what day of the week a date falls on. Despite his exceptional memory, tasks such as brushing his teeth and dressing himself proved to be daunting. When Kim was a baby; the doctors said he would never talk and his parents should put him away. Kim's father has spent years with his son touring to educate people about disabilities. I may not know Kim Peek personally, but I've known of him. I'm sad to hear he has passed, but I know he lived a rich life with a loving father taking care of him.