autism

Quick Autism News Roundup

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A couple of big things happened in the last two weeks or so with autism, and I wanted to compile them.

House Passes Autism Act: The US House of Representatives voted to allow $1.8 billion to be allocated to autism (research, programs, training, etc.) with the continuation of the CARES Act through 2024. The bill now goes to the US Senate, but it needs to pass fairly quickly; the current CARES Act expires at the end of September, and its lapse may mean a lapse in funds for services and research across the country.

What happened, Sesame Street?: I am in the process of writing a blog post for this, but ASAN (Autistic Self-Advocacy Network) has severed ties with Sesame Street after the children’s company teamed up with Autism Speaks for its latest round of PSAs.

“New” Ideas About Autism: I file this under “Wait, you didn’t know this?” A research team concludes that (surprise!) autistic individuals have reasons for their behaviors like lack of eye contact and often do desire social interaction to some degree.

“My experience of living with autism”: I always appreciate first-hand accounts from autistic individuals, especially since they almost always shatter at least preconceived notion I have heard from neurotypicals. This writing is from May, but I wanted to share it.

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Autism and Employment

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WebMD released an article this week about the expectations and experiences of work for  adults on the autism spectrum. While the study has not been peer-reviewed yet, it does appear to offer a solid look at what the office environment feels like for a population who is (unfortunately) still trying to get their foot through the door.

I appreciate the fact that one of the biggest takeaways from this article for me was the fact that autistic adults were not completely sold on the idea of formally training employees about autism. This was mostly because they did not want to be singled out. This was also listed as the reason that they were hesitant about having a different rate of pay. While my trainings have been with non-profit volunteer teams who regularly interact with autistic individuals or families affected by autism, I can understand the hesitation of having an “autism training” at a for-profit company. It’s something for me to think about, for sure.

It is an interesting article overall, and the findings were presented this past Wednesday at the International Society for Autism Research’s annual meeting. The direct article link is below.

https://www.webmd.com/brain/autism/news/20180509/what-helps-adults-with-autism-get-and-keep-a-job#1

autism, Uncategorized

Teaching The Teachers

Last week, I had a team meeting with staff that I don’t see on a day to day basis. Being independent contractors, we are all rarely in the office. Opportunities to interact and review case studies are welcomed meetings.

At one point, I was discussing a case of one of my younger kiddos, who has Down Syndrome. When I causally said “my Down Syndrome client,” my supervisor corrected me by saying, “You mean your client with Down Syndrome.”

I paused, and then nodded. “Right, sorry. I guess my autism references rubbed off, because I often say ‘autistic adults’ or ‘autistic children,’ because the adults on the spectrum I’ve talked to prefer I say it that way.”

You should have seen the shock that swept across the table. “REALLY?!” they all exclaimed. This was a table of developmental specialists, speech therapists, and occupational therapists who have all had at least one autistic client at some point. This was a newsflash for them.

This is by no means a definite across all autistic adults, because of course I don’t know all of them. What the above exchange does highlight, however, is the continued disconnect between intervention workers/programs and autistic individuals. I myself did not realize how much of a disconnect there was until I started researching ABA and how clients view the approach versus how ABA proponents do (spoiler alert: there is a HUGE disconnect). I then started looking at the different agencies and organizations that focus on autism…no signs of any autistic individuals in the agencies’ upper administration, even as an advisory position.

The organization I contract with is not really focused on autism, so I sort of give its staff and workers the benefit of the doubt. For more obvious ones like Autism Speaks, though, I think it is a warranted criticism. How can you properly support a group if you don’t include them in your organization? I’ve made a similar comparison before, but to me it is like creating the NAACP (National Association for the Advancement of Colored People), and then having an all white board at its head.

Bottom line, I’m glad to have shared that insight with my fellow professionals, but in reality, I really shouldn’t have had to.

autism, Uncategorized

The Affinity Project

This is a survey conducted by Sidekicks and Autism Speaks (I know, this surprises some of you). The survey is to identify the different passions that autistic people have. In my eyes, the information could be used to create programs and projects to help autistic people use their passions to contribute actively to society in ways that best suit them.

This is very much the general idea I had with my thesis. To see an organization like Autism Speaks, who has so much influence and yet such a turbulent relationship with the autism community, help spearhead a survey like this is very encouraging.

Oh, and it has prizes for participants, so…there’s that.

The Affinity Project

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Change of Heart?

I believe it’s been about three or four months since Autism Speaks co-founder Suzanne Wright passed away. I have a very…I’ll say tightrope-like opinion of Autism Speaks. Before really looking into the organization, I supported it just as hard as many in the autism field do. I even helped organize a team at my previous job to participate in on of their walks.

As I started reading and speaking with more autistic adults, however, my views changed. I started seeing the true intentions behind the Light It Up blue campaigns and such…and  I did not agree with it at all. I was never in favor of trying to “cure” autism, as I don’t look at it as a disorder that needs to be wiped out. They did, and so I quickly distanced myself and have not participated in any of their events since.

An amazing blogger that I follow, anonymouslyautistic, posted about the recent change of rhetoric that has surfaced on the Autism Speaks website. Apparently, they are no longer set on finding a so-called cure. I can’t help but feel that this has to do with a changing of the guard, so to speak. I checked the site out myself, and yes, they seem to be shifting focus. This could be good for everyone, but if and how Autism Speaks is accepted into the autism community is still in the air. Those who funded it for the sole purpose of finding a cure will probably withdrawal their money. They still have to mend the bridges with those they have severely affected with their words and previous stance. Like many, I am waiting to see how they move forward before putting any real support behind them.

Still…it’s a start.

Here is a link to anonymouslyautistic’s blog about it: Autism Speaks Changes Mission

And here is Autism Speaks’ About page with some of the new rhetoric: Autism Speaks