Race and Autism Diagnosis: Study

We need to talk about this.

Being African-American and working in the autism field, I have certainly noticed that there are very few of my race that I have treated and worked with in my decade in the field. In fact, I can count the number of black clients that I’ve had on one hand. It begs the question of why. This study I read about today starts to shed light on this question.

In the article about the study (both are linked below), “white parents were 2.61 times more likely to report a social concern and 4.12 times more likely to report a concern about restricted and repetitive behaviors” than black parents. They didn’t go too deeply into why, but from experience I can think of a few reasons.

First, there is an idea floating through my community that autism is a “white people” condition. The low diagnosis rate in the black community (which has its own reasons below) is cited as the reason for this belief. This is part of a much larger problem with the community: lack of trust in the medical field, and a belief in long disproven theories about autism. I cannot begin to tell you how many times I’ve had to disprove the autism/vaccine connection theory with my own people.

Second, the black and brown communities are simply not getting educated about autism (probably partly due to the reason above). Because of this, they are often unaware of the more obvious symptoms that were mentioned in the article and the study. In many cases, the symptoms are dismissed as the child misbehaving or just being “not quite right” (I’ve heard this one more than I care to admit). This sets up for a later diagnosis, which leads to delayed treatment, which leads to a more difficult time overall.

I hope to be one who expands the awareness and acceptance of autism into my own community; it could help enhance the lives of a still unknown number of autistic individuals that stand in the midst of the African-American community.

 

Race and Autism Diagnosis study

Article on study by MedicalXress

Do paraprofessionals need more training?

The article below is a heartbreaking one, especially since I have been witness to negative behavior but unable to do anything about it because it was coming from someone above me on the chain of command. It raises an interesting question: do paraprofessionals get enough training?

I have noticed a trend of younger and younger staff being brought onto autism organizations to act as specialists, interventionists, and techs. At one point, I saw many positions on the front lines only needing a high school diploma, and the pay reflected this as well (and sadly, I have learned, still does). They are quickly trained on the basics of the therapeutic approach, some bit on autism, and then released into the wild. I have seen new hires come to me looking like deer in highlights after a week into the position. Despite all of their “training,” they know little about the actual in and outs of autism, and may have little to no direct experience.

That’s not to say that with guidance, they can’t learn. I can think of one young man in particular who I got to interview for a Behavioral Interventionist position. He didn’t have much experience with autism,¬†but he wanted to learn.¬†The dude was a sponge, soaking up everything those of us with experience told him. Within 6 months, he became an amazing BI.

Still, I saw so many bail on the job after a few months (or get fired) because they couldn’t handle it. They at least had the insight to know that this wasn’t for them. The scariest ones to me are the ones like the aide in the article, the ones who either don’t care or have several chips on their shoulders.

Despite all of our knowledge and experience, I still believe that the parents are the ones who know their kids best. I cringe whenever someone in the field says that “we’re the experts.” That’s my second least favorite statement, right next to “fix them.”

In any case, this is an open question. Do you feel that the paraprofessionals in the autism field need more autism training? Is there another solution to keep stories like this from happening?

My Paraprofessional Was Supposed to Help Me

Here is another article discussing the issue from Psychology Today: The Para-professional-Student Relationship

This. This is why SPARC exists.

This is why I do what I do, why I want my organization to be successful. Stories like this are the reason why. Your entire life can change when you identify your life purpose and passion.

20-Year-Old with Autism And His Mother Open Bakery to Employ Others On Spectrum

Here is the link to the bakery: No Label at The Table

 

To read my MI Series, which discusses theory of multiple intelligence and the different areas of intelligence, click here. Or, catch up on the first two blogs of the series, Spatial/Visual and Interpersonal.

The (good) trend continues…

It’s really great to see more and more places and communities welcoming autistic individuals in this way. I especially love the “quiet room” idea at the amusement park and handing out toys while waiting in line.

I think I may start a Soul Sunday feature where I post articles and videos like this to show that inclusion is being worked on and spread.

How amusement parks are welcoming children with autism

The Value of Connection

I saw an article today on the results of a study about music therapy and autism. The study¬†indicated that “improvisational music therapy, compared with enhanced standard care, resulted in no significant difference in symptom severity based on the ADOS social affect domain over 5 months” (Bieleninik L. et al. JAMA 318, 525-535 (2017).

This is a bit of a letdown to many in the music therapy world, but it is also a call to action of sorts. Some of therapies outside the normal scope of the traditional autism therapies (including music and listening therapies, dance therapy, drama therapy, etc.) can take a lesson from this study.

By improving and adjusting the therapies to accommodate individual differences, focus on connection/engagement, and folding the parents/family into therapy, there may be clearer and more positive results. I have noticed this to be the case in many of the more “traditional” and clinical therapeutic approaches.

I have seen clients improve from these more art-related therapies, but a key component to client success lies not necessarily in the therapy itself (though it may certainly help, of course). The key is connection and relationship. In an article about the study on spectrumnews.org, it was noted that other studies have indicated that having a connection with the music therapist improved clients’ social skills. Working on creating a connection is, in my eyes, the most important part of any autism therapy. If you have engagement, you will naturally be able to do more with and for your client.

Below is a direct link to the article about the study. I would love to hear others’ thoughts about this. Have you tried music therapy before? Did it help? What was the experience with the music therapist like?

Music therapy for autism shows minimal social benefit