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:
In working with child and teen clients, I have seen other professionals address the subject of siblings in one of two ways: inclusion or exclusion.
Thankfully, most of the time there is some degree of inclusion. Siblings are an intricate part of the everyday life of a child, and when the child is on the spectrum, brothers and sisters can take on a much more important role.
In most of my experiences (but not all), the siblings have been neurotypical. They are having a host of emotions regarding their autistic brother or sister: they are at times protective, sometimes jealous (because of the attention their sibling gets), often a bit confused as to how they can help, but almost always coming from a place of love.
For workers and professionals, they can present a challenge. The siblings often want to be involved in some way, particularly if the therapy is a play-based approach like I tend to use. They see the “cool” things I’m doing with their sibling, and naturally they want to be a part of it. Completely cutting the sibling out of the play (or worse, telling them that I’m only there for the client) can have negative results; the sibling may start acting out or “sabotaging” the session. Of course, if they have too much freedom, they could undercut whatever the worker is trying to do.
Here are some of the things I have done to incorporate the siblings into the sessions in a constructive way:
- Sometimes, they just want to play with the “new” toys (if a worker brings toys) . With one family, I started giving the older brother his “own” toy/play station at the start of the session. This greatly minimized his tendency to snatch toys from my client.
- Doing activities that all of the siblings (and ideally all of the family members) can participate in equally. Active games like ball games (kicking/rolling back and forth), art activities (fine motor skills treasure troves!), and board games (turn-taking, social interaction) are great ways to have fun, work on skills, and involve everyone.
- Enlisting the siblings to help their autistic brothers and sisters. I honestly believe that kids want to be loved, accepted, and praised, and this is a great way to fold that in. I have seen parents do this really well, and in a variety of ways. The easiest way is having the sibling model some behavior or routine that they would like the autistic child or teen to pick up on. The praise they receive for their help does a lot to raise the self-esteem of both siblings.
- Cooking can be a great activity, especially if any or all of the kids/teens show an interest in doing so. Interventionists have created some great cooking sessions where they have made everything from sandwiches to stews with the family. Make sure to use safety first!
I always try to talk to the siblings in some context, even if it is just a check-in while writing up my note or setting up. They often feel left out when their neurodiverse siblings have special friends coming in to work with just them. Looking at it from the neurotypical sibling’s viewpoint, I can see why they would feel isolated in that sense. I also make a point to commend the parents who have fine tuned the delicate art of giving all of the kids quality time, because it is by no means an easy feat. I encourage my fellow professionals to do the same. 🙂
This is a topic of interest for me, so much so that I created a training for professionals on dealing with “difficult” behaviors in clients. When it comes to autism, difficult usually refers to behaviors that are inconvenient, unnerving or harmful, or possibly embarrassing. They range from persistent flapping to self-harm, and cover all points in between. The bottom line with all of them, however, is usually the same with families and adults who work closely with the clients: they would like the behaviors to reduce or stop.
In the training, I challenge my colleagues to become detectives first, and to view the behaviors from the eyes of our client. So, let’s take a new client, Paige. She is 14 years old, and nonverbal. She does not yet use any devices to communicate, aside from occasional pictures similar to PECS.
Paige often takes off running for no apparent reason. Sometimes it is just into another room, but sometimes it leads to her running towards traffic or out of the family home. Her family have no idea how to stop it and are deeply concerned for her safety. There are two things that need to be addressed almost simultaneously: Paige’s safety and the reasons behind her running.
A safety plan may be set up immediately, and nothing punishing is involved in it. Doors are kept secure, and someone stays with her regularly until the next step is engaged. At the same time, we start walking through a loose version of ABC (Antecedent, Behavior, Consequence) Data collection. This is one of the aspects of ABA that I actually like, because it brings in the detective aspect. We start examining all the events immediately leading up to the bursts of running, and I document them. After a few minutes, a pattern is noted. She tends to run when a large number of people enter the room she is in (about 3 or more). This is especially true if she is given no warning (for example, if neighbors or family members unexpectedly drop by). If Paige did have a device to communicate (or was verbal), I would more than likely get her input as well.
The family and I develop a plan to let Paige know when to expect an influx of people. We also let her know that if she gets overwhelmed, she can squeeze a trusted adult’s hand to let them know that she needs a break. Her receptive language has proven to be high, so we all believe that she definitely understands. This gives her some autonomy to tell us when she is feeling out of sorts, rather than us just assuming. After a few test runs, Paige is able to squeeze to alert her family. Within about three weeks, her running has reduced by over 50%.
For many behaviors like this, there is an underlying reason that we may be missing. It is usually something that a neurotypical individual would never guess, because it is not something that normally bothers us. This is why I like to reiterate how many neurodiverse brains tend to filter very differently from our own. This sets up a better sense of understanding from families and caregivers, and allows them to become better detectives and listen to their neurodiverse loved ones’ cues, whether they are verbal or not.
Next week: The behavior discussion continues with a look at the actions that aren’t harmful, but still baffle many of us. Have a great week, and feel free to email me with any questions/comments at email@example.com.
I’ve seen some great videos come out of the National Autistic Society in the UK about the autism experience. I really wish that the US organizations would take a similar approach, but hopefully we’ll get there. I want to hear from some of you: do you think that this video captures some aspects of adult autism? Is there anything that is different in your personal experience? I would love to use it in an upcoming training, but I wanted to see what others thought first.
This video is AMAZING. I literally got teary-eyed.
I try to avoid posting anything political on this site, because that’s not what it is for. I do, however, discuss autism on here. At the bottom is a link to U.S Presidential nominee Hillary Clinton’s plan to address autism in the United States. A couple of things impressed me:
First, she is addressing the entire age spectrum; kids, teens, and adult populations. We often focus on early intervention, and that is important, but what services are there once these individuals turn 18? 25? 45?
Second, she is addressing the minority populations. I speak from experience when I say that the “brown” communities (Black and Hispanic, mainly) are highly under diagnosed when it comes to autism. Some of this is because of a lack of resources, some from a lack of awareness in the communities (I have heard some people say that “black people don’t get autism”), and some from a predisposition in the medical and educational fields to assume low intelligence rather than an exceptional mind.
Third, Clinton is calling for more funding in all areas of autism. Thus far, a vast majority of funding is aiming at research to identify the cause and “cure” for autism. Very little in comparison is focused on the programs and services that autistic individuals and their families need now.
At least for the United States, I think this is a good starting point. She’s addressing some of the very areas I’ve raised concerns about. So…what do you guys think?
PS: I want to keep the comments on the subject of autism and the autism plan itself, not Clinton. Is it a good starting point? Could it go further? How? Did it miss anything? What would you add/edit?