No, not exactly an autism piece, but this does give a hard look at the reality of being black and in special education here in the United States. This has to change, not just on the end of the institutions, but also on the end of the African-American community and its understanding/acceptance of neurodiversity. For both ends, education is critical.
This past Wednesday, I was able to attend the evening reception for SAP’s Autism at Work conference. It featured a Q&A panel with three known authors in the autism world: Steve Silberman, John Elder Robison, and Dr. Stephen Shore. Robison and Shore are both autistic.
I quickly became aware that this reception (and indeed the conference itself) was attended by both neurotypical and neurodiverse individuals. It was my first time attending such an event, which was a bit bittersweet; this should be the norm for such conferences. There were even color codes on the name tags, letting everyone know each person’s level of comfort with being approached. Silberman later explained that while this was common for the autism conferences/talks he attended overseas, it was the first time he had seen the practice here in the United States. This further let me know how far behind my country is with regards to autism awareness and acceptance.
It again became clear when I asked the panel about their experiences with regards to how black and brown communities approach autism. Silberman woefully admitted that he wished he could have included more people of color in his book NeuroTribes, and Robison stated that the racial divide in autism is yet another symptom of the racial divide in medicine and education overall. Silberman shared a quick story of how he spoke with a black man who, when Silberman mentioned that he wrote a book about autism, basically replied, “Oh, that’s the white people disorder.” To say that the story saddened me is an understatement, but I am glad that I mustered the courage to ask about the topic. It led to several great conversations with other attendees afterwards.
This is one of the aspects of autism acceptance that hasn’t been achieved yet. There is a general awareness of it for the most part in minority communities, but it is still not understood enough in those communities to warrant full awareness. I know people who still put autism in the same category as MR, or like the man in the example, do not think it affects their community at all. A Mexican mother whose autistic son is a client of mine is very nervous about having him attend regular classes once he starts school. She would rather have him in special education classes than to face the bullying that she feels he would suffer through in mainstream classes. It broke my heart to hear that, especially since I feel her son has the potential to be able to thrive in regular classes of interest.
I want to end on a positive note, though, so here it is: The entire two day conference is a strong indicator of a shift in the business world. Companies are starting to realize the potential autistic employees have and how having neurodiverse people on their teams will help their companies grow and thrive. They recognize that hiring practices and procedures need to change and adjust; do talented individuals really need to go through a face-to-face interview? Do HR departments know how to bring in more neurodiverse applicants (right now, the answer appears to be “no”)? The questions and situations are starting to be explored and asked, which is a great step forward. Institutions are starting the slow process of change.
Here are a couple of pictures from the reception, including the books I got signed:
I’m traveling/on vacation right now, but I wanted to share an amazing post with everyone about Autism Acceptance Day. The author, who is an autistic woman, made a wish list of what she hopes to see for autistic individuals in the future. Number four particularly resonated with me, as I know that I am still working on this due to being a product of my environment when it comes to autism services. The goal of “normal” is still very much the norm, so to speak, and I would like to help change that, starting with myself. I am still a work in progress. I may do an post just on this subject in the future.
I first heard about Julia, a new Muppet on Sesame Street, over a year ago. She was part of an online autism awareness campaign that Sesame Street launched. I remember that while she was pretty well-received, there was a concern that she may be too “high-functioning” (Can we please think up another way of saying this, by the way?). Julia is now set to make her first appearance on the TV show.
From what I’m gathering in the article from CBS News, Julia as she is appearing on the actual show may be a bit more towards the middle of the spectrum (if such a guideline exists). One character cannot possibly capture the entire autism spectrum, but I do commend Sesame Street for not only introducing an autistic character, but for also consulting with a family in the process.
I’m adding in an extra chapter to this series because of what went down on my personal Facebook last night.
Knowing that some of my Facebook friends are practically ABA zealots, I decided to write a segment I sometimes call “Unpopular Opinion.” In this one, I put the ABA community to task for not appearing to listen to the autistic adult community when they give their critiques and suggestions for ABA and how it is executed. I also noted how ABA has monopolized the autism field, leaving little room for any other approaches. I then ended with a dig at the new healthcare bill by Republicans, adding that if it goes through then all of this may be a pointless rant. Then I sat back and waited for the incoming torpedoes.
They didn’t come, at least not exactly.
One person did come on defending ABA as the only evidence-based practice. I then explained down thread what I called the “Catch-22 Carousel.” ABA gets funding and put onto insurance because it is evidence-based, which takes away from funding for other approaches to conduct research to…prove they’re evidence-based. That aspect of the conversation stopped soon after I made that point. When they asked where the research was, I pointed them to Stanford’s Annual Autism Symposium, which takes place in about two weeks. They genuinely seemed interested in attending.
What really made the conversation, though, was the intrigue from others over other parts of the post. I had a great conversation with one former coworker about the effects of the healthcare plans on autism services (which included our job prospects), and another conversation about offering more support to autistic adults and what that should look like (employment/workplace support was high in priority). Just about everyone agreed that there should be a variety of therapeutic services for families and clients to choose from, and to not have that is a detriment to our overall goals and why we entered this field to begin with.
Most of my Facebook friends are ABA enthusiasts, so their silence did not surprise me. I was actually impressed with the ABA Specialist who wanted to hear more about the research into the other approaches, as opposed to just ignoring or shutting down when I made my point. Another friend from back home mentioned the PEERS approach, which I had never even heard of. My rant led to a new approach (at least new for me), and I am now going to go learn more about it.
Some of the parents, meanwhile, simply liked, loved, or thanked me for the post.
The conversations that sprang from that post made me think beyond my viewpoint, go and research some things as I was replying to others, and led me to new ideas. Sometimes speaking your truth can lead others to do the same, and sometimes, everyone listens and learns something in the process.
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.
So I decided to title the series The Bridge, since that is essentially what you’re doing in this line of work. I hope that the series helps not only workers (whether a Specialist, Interventionist, Counselor, etc.) who are anxious about entering into this field, but also autistic people who may wonder why the heck we do what we do sometimes.
The first session is always the scariest one. Here’s the truth: no matter how experienced or confident you are, you’re going to be nervous. It’s a brand new client, and a brand new family. You (hopefully) know that you cannot approach this client exactly the same way you approach others, because you know that if you’ve met one autistic person…you’ve met one autistic person.
So what is the first thing you do? Jump straight into what they’re doing? Parallel play nearby? Redirect them to an activity of your choosing?
Me? I observe.
I usually tell the family that the first session is the introduction session and that I’m taking mental notes. In my silence, I start to answer several questions and make observations. Let’s use a kiddo I will call Peter as an example. Peter will be a composite of several different clients I’ve had in the past. He will also be a younger client since many of you that the series is intended for probably work in early intervention. I will rotate my example clients throughout the series.
So when I walk into Peter’s room, the little tyke is paying me little to no attention. He is walking around, humming to himself, and then briefly makes eye contact. I make a mental note of about how long the eye contact was (maybe one second) and will keep an eye on how many times he does it. He then retreats into a corner of the room, on the other side of the bed. So he has some kind of coping skill; he knows when to remove himself from a situation if he feels anxious or unsafe. I don’t follow him over.
While he is there, I ask his parents for some information: preferred toys, daily routine (I take another mental note if there is a lack of one), gross motor activities (does he do a lot of jumping, running, spinning?), family participation (do siblings engage or not, and what is his usual response?). Is Peter overly cautious, or does he throw fear to the wind?
I’m not writing any of this down, but I am starting to build a Peter profile of sorts in my head. All of us do this to some degree with people in our lives, and I assume that Peter is doing something similar with me. These first impressions set the stage for the entire process, so I don’t want to cause him any unnecessary fear or anxiety. The biggest thing I try to avoid is pushing myself into his safe zone too much. For session one, I just want him to know that I am there, I will be coming back, and that I want to play. I tell him this at the start and the end of the session; just because he’s not looking at me, doesn’t mean he’s not listening.
Goal of session one: Recon
For session two, I plan to come baring items of interest.