tag:blogger.com,1999:blog-5751271189667675662.post8290018882435134511..comments2024-03-28T09:19:51.567-04:00Comments on Look Me In The Eye: Thoughts on the direction of autism researchJohn Robisonhttp://www.blogger.com/profile/07407165016025447113noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-5751271189667675662.post-48474105343525652602016-10-26T07:41:54.682-04:002016-10-26T07:41:54.682-04:00I am undiagnosed and likely a heterozygote of sort...I am undiagnosed and likely a heterozygote of sorts. I have a tendency to think in black and white/all or none terms, especially around ethics. I do believe in some stark elements of right and wrong, but I also have learned over time that "always and never are always (usually) wrong and never (rarely) right". Going all in with your diagnosis may be the right thing, but I think every case must be examined for specifics. I think that it depends on who those people are and how you think they may act - or how secure you are in your career. I think it is an individual choice and it doesn't have to be all or none. I don't think that other people have a right to know your business or that you have an obligation to educate them. That said, if you think it's safe it can be very helpful for the larger cause to do it. But only if it's safe. The trick for me is to evaluate the situation in as realistic a way as possible. Having good friends to bounce things off first is also very helpful. <br /><br />One way I have suggested that schools deal with my son's ASD is to describe specific areas of challenge for his peers, but not necessarily to give him a label. If you've seen one Aspie, you've seen one Aspie. Like all people. But, being an advocate in a larger sense could have a great value to you and to others if safe. <br /><br />I also think that having this nuanced conversation with your children could be of great benefit and it depends on their situation and comfort level as to how much they would like to reveal. <br /><br />I have found that understanding the elements of ASD that I believe I have has been very helpful on a personal level to understand myself - but sharing is my choice only and not a requirement. Laura Chttps://www.blogger.com/profile/09700896540621322460noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-7465083613706493662016-10-06T09:41:51.935-04:002016-10-06T09:41:51.935-04:00So, I have a tangentially related question. I'...So, I have a tangentially related question. I'm a professional woman in my mid-40s who was recently diagnosed as Asperger's. I think this has helped advance my career immensely (and I'm not an engineer, scientist, or in IT, thanks pop culture, but I do have to, essentially, translate highly technical information so laypeople can understand it). Being an Aspie has also hurt my career, because I can't always read what some people really want to accomplish, I can be overly literal, and I've not always communicated feelings and on-the-fly decisions effectively. This has cost me. <br /><br />My question is - In this era of diversity and inclusion, and people speaking up to raise awareness on a variety of issues - Do I basically "come out" professionally? I want to be a positive example, especially for my 8-year-old Aspie son who is really struggling right now. I want to make others aware that "quirky" (something I've been called my entire career) may mean something more and to understand. I also have some latent fears that freely talking about it will cast a professionally limiting pall on my career, that people will begin making assumptions about my actions and choices because they watched Rain Man last week. <br /><br />Do you feel that someone who has reached a certain level of success who discovers they have a discernable (and often stereotyped) difference may have a near obligation to come forward and begin breaking stereotypes and helping awareness? I've taught my kids this - my teenaged daughter with OCD is a great mental health advocate (end the stigma and help people be unafraid to seek help!) and I'm telling my son that as an Aspie, he has a duty to show himself to his friends as a person with a condition rather than a person defined by his condition. So not being out front with my Asperger's is beginning to make me feel like a hypocrite. <br /><br />Does anyone have any thoughts? Am I overthinking this, heh? Pjohnsonhttps://www.blogger.com/profile/17854564425189753379noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-74826128164288670462016-08-04T23:05:35.044-04:002016-08-04T23:05:35.044-04:00I agree that there are huge gaps in services, jobs...I agree that there are huge gaps in services, jobs, etc. for autistic adults. My 20 yr. old daughter who is diagnosed with ASD (Asperger's) is a very lovely, bright, amazing person. We are doing our best to help her make her way into adulthood. Thank you for all you do and for calling attention to autistic adults. Anonymoushttps://www.blogger.com/profile/03002666419522169849noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-59657935037365070442016-07-18T07:16:59.364-04:002016-07-18T07:16:59.364-04:00Yes, Jean...I agree about the medical marijuana he...Yes, Jean...I agree about the medical marijuana helping. I followed the blog this mother wrote, which was supposed to last this year. Sadly, her son died, I think he was 18 or so, without a real understanding of what caused his death. But his last days were made much better by medical marijuana. They moved to Colorado to be able to use it legally. He was dying...and it gave him release from pain and anxiety. (https://www.youtube.com/watch?v=B3ALWEg57to) It's maddening that something so obviously helpful is being held back. Maybe his death will not be in vain. His mother's love for him was so obvious, she wasn't shamed like so many parents of severely handicapped autistic children are...she was fighting a battle for him, not against him.<br /><br />You are endlessly patient, Mr. Robison. I hope things go well at the meeting, and any move towards autism and away from "othering" has to be good. You are right to say that the medical model alone is not enough. Getting more educational input would be good. Most of my son's teachers were exceedingly kind. I think a push for so many kids who suffer from "learning disabilities" that make school hell would be good. It isn't all about their behavior...some of the problem is the lack of empathy towards kids who are treated as though they are crazy/lazy/stupid when they are doing the best they can, giving 110%. Accommodations for the blind aren't questioned...why do we question them for those who learn differently?<br /><br />Oy...I don't know. I know you will be respected and represent all of us to the best of your quite able abilities. <br />Anonymoushttps://www.blogger.com/profile/17483338697284880035noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-62961689092499227132016-07-18T07:02:03.159-04:002016-07-18T07:02:03.159-04:00I agree, John. I'm not sure if we have even su...I agree, John. I'm not sure if we have even surveyed the needs of autistic adults in a valid sample. A good needs assessment is almost essential to starting interventional research. Also, it is important to study how we might characterize subgroups. Knowing more about subgroups may clarify some of the different needs and give us a better roadmap to helping people make adaptive changes as well as advancing basic research into causes. <br /><br />As part of the subgroup question, I will share that I am the pediatrician mother of an autistic son, and I see many similar characteristics in myself (pronounced algorithmic thinking and an initial focus on principles before people) but I do not score as autistic on any scale perhaps because I have very few sensory symptoms and also because I have adapted quite a bit socially over the years. Are these sensory symptoms really a sine qua non of autism or are they a closely linked phenomenon to a difference in thinking patterns? Are there other associated characteristics? Understanding these may help to identify more people who have adaptive issues and may allow us to better help them. It may also untangle the whole issue of different thinking patterns (which many autistic people treasure) vs truly disabling symptoms. Perhaps a post-hoc treatment or even a preventive fix may be found for those, without taking away some of the special abilities. <br /><br />I would be very interested in your thoughts on this, should you have the time or inclination. Laura Chttps://www.blogger.com/profile/09700896540621322460noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-70490336544778587102016-07-17T22:32:23.070-04:002016-07-17T22:32:23.070-04:00Agree 100%,John.Have you read about the possibilit...Agree 100%,John.Have you read about the possibility of medical marijuana helping people with autism to function better? Looks promising. Thanks for all you do. You have changed the world for the autistic community . A great accomplishment! You should be so proud. I'm so proud of you! <br />Jean Sunellhttps://www.blogger.com/profile/14481997918120260006noreply@blogger.comtag:blogger.com,1999:blog-5751271189667675662.post-86556294814991816752016-07-17T22:31:37.718-04:002016-07-17T22:31:37.718-04:00Agree 100%,John.Have you read about the possibilit...Agree 100%,John.Have you read about the possibility of medical marijuana helping people with autism to function better? Looks promising. Thanks for all you do. You have changed the world for the autistic community . A great accomplishment! You should be so proud. I'm so proud of you! <br />Jean Sunellhttps://www.blogger.com/profile/14481997918120260006noreply@blogger.com