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

Thursday Thoughts

After dealing with hurricanes threatening most of the people I know, some family crisis, and a generally busy schedule, I have emerged from oblivion!

The article that pulled me out of, well, life was a somewhat familiar trope for me in this field: the hunt for a “cure” at any cost. This time, though, the focus was an approach I had never heard anything negative about until now.

I have heard about the Son-Rise approach off and on throughout my career. For some reason, it was often interchanged with the DIR/Floortime approach, which is different but seems to have a similar thread of being more naturalistic. I noticed, though, that I didn’t see many families in my work attempting this approach. I went on to study Floortime and ABA more closely, becoming an advocate of the Early Start Denver Model’s combination of the best of both worlds.

This article, though, really looks at what happened when autism therapy became a business. It aims mostly at Son-Rise, but the pattern is pretty familiar for any family who has uncovered every stone in a search for answers. They really go to all corners for their children, and sometimes people/organizations take advantage of that by suggesting that they have all of the answers.

I wanted to say this much: Parents, I know you see many of us as experts, the ones to come in and “fix” everything. I do not see that as my job, and I know others who feel this way. I want to empower YOU, because at the end of the day, you are the ones who love and are with this individual 24/7. Yes, I know lots of terminology. Yes, I have seen lots of clients and gained great insight into the world of autism. I still need YOU. Your child/teen/adult still needs YOU. After every therapy session, homeopathic oil blend, or new breakthrough, it still comes down to you and them. In all honesty, I learn more from my clients than any book, training, or degree program can possibly teach me. They are some of the most amazing people I have ever met, and so are their families.

Anyway, coming off of a really great session yesterday, I wanted to share that. The session wasn’t great because the client had “perfect behavior.” It was great because everyone (me, the parent, and the client) learned something.

I feel like I’m rambling randomly (and I probably am), but I wanted to share those thoughts. The article is below, and opens up quite a dialogue about the Son-Rise approach in particular. Oh, and shout out to one of my former coworkers, Andrew Shahan, who is featured in this article and who I count as one of my favorite trainers. 🙂

A ‘cure’ for autism at any cost

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

 

Female + Autistic = Ignored

Thinking back on all of the clients that I have had, few of them have been both female and autistic. While I have seen numerous mothers who (to me) clearly had the textbook signs of autism, they never had a diagnosis and often presented as more worn and drained than their counterparts.

This is a very real issue in the autism world. I’ve said this before, but looking back at my traits as a preschooler, I had some signs myself. They were never addressed or even brought up aside from one random report. I couldn’t sit still during circle time, had a strange fascination with beating/cleaning the erasers, and played alongside kids rather than with them. I was humorously labeled a “non-conformist,” and that was that.

I’m not saying I’m on the spectrum, but really, how would I know? It’s never been given as a possibility, often because I was too well-behaved (read: quiet), did excellent in school, had friends, etc. The truth of the matter is that the medical and mental health communities do not look for autism in girls/women like they do with boys/men, and this needs to change.

The articles below do a nice job of discussing this further, if you wish to do some more reading into it:

Girls with autism getting a rough deal

Diagnosed at 45 with autism