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

 

“Broken Normals”

This debate that is summed up in the video below is pretty much the epicenter of the autism world: “cure/treat” versus acceptance.

It is what separates the different therapeutic approaches, the location and allotment of funding, and cultural response with regards to autism. Do we aim to “fix” autism, or do we aim to accept autism? While I personally come from the angle of acceptance, a sizable chunk of the autism therapeutic community thinks otherwise, and that is evident in where the money is going.

At some point as a society, we accepted other forms of neurodiversity and assimilated them into the flock. Even though discrimination is still present, and laws to protect are still needed, we overall moved past the need to completely erase certain conditions. It took a LOT of work, though, and the fight continues today. I wonder when we will get to that point with autism, and how much education and acceptance it will take.

I may do a much longer post on this subject later, or maybe even a series. Heaven knows the subject deserves it. For now, this is a brief look into it.

VICE News: “Broken Normals”

Quick Tidbits

I’ve been having my own form of writer’s block for the past few weeks. I can’t tell you how many blog posts I have started that now sit idle in the Drafts folder. I will get to them, I promise. In the meantime, I decided to give some practical tips that I’ve learned/been reminded of by some of my new clients. We can always use tips, right?

  • For some of my older clients on the spectrum, a lot of anxiety is reduced when they are given the whole picture or situation first. We tend to assume that they will not be able to process everything at once, but giving information in little pieces (especially if they are directions) can also make them anxious because they don’t know what’s next. What I’ve learned to do is to give the overview first, and then each step afterwards as we hit it. For example: “Okay, we’re going to make lemonade today. We’ll need lemons, water, and sugar so that we can mix them together.” Boom, I just summarized the entire recipe. After I did that, the client walked me through the process, asking when he needed clarification. While he is what would be considered “higher functioning,” he still needed the anxiety reduction.
  • Many kids love the feeling of independently doing and choosing for themselves. Even if it is not a true choice (say, choosing between your two choices), the illusion of choice can be a great asset. I try to give my clients choices whenever I can. Sometimes they bounce the ball back into my court for me to decide, but I offered them the choice, and that goes a long way.
  • To my fellow workers: it is really easy to assume that a parent is just being bossy, lazy, whatever trait you believe you’re seeing that week. Try to step into that parent’s shoes. Most of us get to go home at the end of our day. For those of us without kids, we go home to stillness (most of the time). For our clients’ parents, their challenges and triumphs continue long after we’ve gone home. It’s just a few hours a week for us…it’s 24/7 for them.
  • That being said, workers, know your boundaries. You have to take care of yourselves before you can take care of anyone else. Our clients can pick up when we’re tired, hungry, or just plain pissed about something…and the result is usually a less than stellar session. Parents, we go through a different kind of burnout. We are not just worrying about the well-being and future of your child; we often have several more families we have to put equal energy and time into (or dozens more if you’re a case manager). We’re not trying to be rude or mean if we hold our ground on session times or availability. We’re trying to make sure we can continue to be the best that we can be for all of our clients, including you.
  • Workers, think outside the box. Not just with your clients, but also in regards to your job/position in an organization/your own practice. What are your strengths? How can you use them for the betterment of your organization/practice? Are you doing things that others are not? If others are doing it, do you have a unique spin or voice to bring to the table? Is there something you see in your client that others don’t?
  • This one goes to everyone: have fun. I’m serious. I work mostly with kids, and I see so many instances of family and workers alike getting so wrapped up in the goals and the data that they forget that they are dealing with a kid. I celebrate when a client has a “kid moment.” In that moment, autism wasn’t some horrific veil hanging over their heads (according to everyone around them). Autism was a way to really feel the sunshine and the wind, to appreciate every color dancing across a bubble. Autism led to a laughing fit to end all laughing fits. I’m not trying to downplay the challenges of this type of neurodiversity. It is a tough road to tread, nearly impossible at times. What I am saying is to really be in the present when it comes to those moments where the child is just being a child. I dare say that maybe, just maybe, you may want to join them there.