A biomarker test for autism?

I really love the work that the UC Davis MIND Institute is doing with regards to conditions such as autism and ADHD. This newest bit of news could help identify a certain subset of autism much faster. According to the article, it would probably only identify about 17% of children on the spectrum for now. This could, however, lead to specialized diagnostic tools and interventions that could benefit everyone further down the line.

Here’s a link to the article, and definitely check out the rest of their site. The MIND Institute is always looking for research participants, and has regularly updated information on their findings.

New Biomarker Panel Could Accelerate Autism Diagnoses 

Compassion Fatigue

First…yes, this is a real thing.

There is such a state where you have been giving so much and caring so much that you get physically, mentally, emotionally, and spiritually tired of it. We even have a more technical name for it: Secondary Traumatic Stress (STS).

Let me make this clear: This does not mean that you are a horrible person.

What it does mean, in basic terms, is that you have been giving more love and positive light than you have been receiving. If you are constantly hit with negative or stressful images, words, situations, and people, then it makes perfect sense that it will eventually take a toll. So, if you are a news buff who doesn’t agree with current government trends who is also trying to take care of your mother (who has dementia) while also volunteering for an animal shelter…yeah, you’re probably going to have STS at some point.

adult alone anxious black and white
Photo by Kat Jayne on Pexels.com

You’re going to get tired. You’re going to find yourself not caring as much and then feel guilty for not caring as much. You will suddenly find yourself having a shorter fuse, losing or gaining weight, and maybe feeling less assured that the world is not a giant rock of despair. Yes, this is normal…it means you care.

So, being in the midst of STS setup situations myself, I started creating a routine “care schedule” for myself. Some of these really basic items include:

  • Going for a walk, or spending time in nature.
  • In lieu of the first one, taking a shower and leaving the house at least once a day (even if it’s just to sit at a park or get a coffee)
  • Not watching the news 24/7. Don’t get me wrong, I keep up with it in general, but I don’t watch any 24 hour news channels.
  • Meditating. This one can be life changing.
  • Having a couple of guilty pleasures. For me, it’s Pokemon Go (yep, I’m one of 10 people that still plays it), and two music groups I’m supposedly too old to like (BTS and 5 Seconds of Summer…don’t go judging me, lol). Also, little wonder why I get along with kids/young people so well…
  • Doing some kind of spiritual work for myself or others. This doesn’t seem to drain me at all, and I believe it is because when I’m doing anything spiritual, I am pulling from the overflow of Spirit/the Universe, and not my own reserves.

Right now, it can be a pretty difficult time for a lot of people, especially in my generation. Our parents are getting older, so we may be starting to take on caregiving roles. We have an absurd amount of financial instability thanks to everything from student loans to low wages. The political atmosphere here in the States (regardless of what side you’re on) is just…annoying as hell, to put it extremely lightly. Please take care of yourselves during this time. Also, feel free to give other ideas (either here or on your own blogs) on how you battle STS.

If you do a post about this subject, link it in the comments section!

Also, check out my previous post “To The Strong Ones” that also touches on this subject.

 

 

Tuesday Thoughts

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I think Tuesday posts are going to be the days where all of my not-quite-realized post ideas are going to go. So, without further adieu…

  • Reading the thoughts of a young adult on the spectrum (via Facebook) has been one of the biggest eye openers for me, because he brings up situations and viewpoints that I never conceived of.
  • The autism world with regards to therapeutic approaches is becoming increasingly marginalized. It’s like being in a circle surrounded by base camps…and you are either not invited to them, or you don’t quite agree with them. Interesting position to be in…and a great launching space to create your own base camp.
  • A parent told me that she was confused when someone asked her what her son’s “special gift” was. She shrugged and replied, “I told her that I didn’t know what it was or what she meant.” I glanced at him, looked back at her, and thought, “Spatial intelligence.” I don’t really see them as gifts, though.
  • I follow several families on the @sparcguidance on Instagram. They are all composed of pure awesome, and I love that they are sharing their journeys. It’s not easy and not for everyone, but I appreciate it.
  • A 2-minute questionnaire has been developed by researchers at Rutgers University that could identify autism in children much younger than the average age of around 5 years old. You can read more about the questionnaire here and here. This is fascinating, especially since it appeared accurate across different socioeconomic groups. I think that has a lot to do with the fact that the questions are in layman’s terms, as opposed to overly academic or analytic jargon.
  • Finally, a multiple intelligence note: As I’ve mentioned in my post on spatial intelligence, I’ve noticed that quite a few of my clients have been above average or exceptional in this category, regardless of sex, race, etc. It is not the easiest intelligence to spot, though. So here is a tip for parents: Someone with high spatial intelligence is often good at building, but they may be also really good at directions and orientating themselves to areas. They are really good at games that focus on spatial strategy (like Blockus or Tetris-like games), and can probably help with putting things together, be it a Lego set or that new chair for the living room. The key to remember in any of the intelligences, though, is that the person enjoys it. If they love it and are good at it, you have potentially found their purpose.

Programing Note: We’re on the lookout for guest bloggers, so please drop us a line at sparcguidance@gmail.com if you want to write something about autism, multiple intelligence, life purpose, etc.  We’re also working on our first workshop on multiple intelligence and uncovering them! We will give more information once everything is finalized, but we are definitely excited about it!

Have a great week!

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