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!

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.

Passed Over, Brushed Aside

This article is why I do what I do. I have seen first hand how signs of autism that are clear as day to me and my client’s family are brushed aside by professionals. This seems to especially be the case with minority communities. I really want to change this. I want families to be educated and informed, but I also want that for the professionals that see and treat them. Sometimes you have to go beyond the diagnostic criteria and trust that maybe, just maybe, the family has an idea that warrants a closer look.

A family’s yearlong struggle finally results in son’s diagnosis of autism

LA Versus Bay: Autism

I am FINALLY in LA and settling in while scoping out the apartment scene. I have also been taking the time to look at the various agencies that focus on or at least include autism therapies in their offerings. I have already seen some interesting differences between agencies in LA county, and agencies in the Bay Area, and I’m sure more will pop up (which I will definitely write about). I will stress that this is just based on personal research I’ve been doing on agencies in LA (both before and after moving) and the Bay Area (which I have worked in and for); this is by no means comprehensive or an absolute of the offerings of these two areas. It is literally a “first impressions” kind of deal.

  1. Wraparound services and the concept of such seem to extend beyond the agencies themselves in LA. They tend to partner up with other agencies a lot more, mostly because the agencies down here appear more specialized in their missions. I’ve noticed that in the Bay, many agencies (at least the bigger ones) tend to be one-stop shops in a sense; for example, they will offer intervention or behavioral services, speech therapy, and occupational therapy in one organization.
  2. Because LA county is so freaking huge (and a pain to drive in), the agencies are much more narrow in their geographical scope here. They often have to limit themselves to certain communities, and even demographics within those communities. In the Bay Area, agencies tend to have more geographical reach and usually overlap in coverage areas. At my last job in the Bay, I had clients from Mountain View, to south San Jose, through Milpitas (google a map of the area, and you’ll see what I mean).
  3. The diversity of the type of agencies, at least for now, appears more vast in LA. Up north, there were no known agencies that utilized the Floortime/DIR method, and this was one of the reasons why I felt so left out of the autism circle there. ABA exclusively rules the land. While it also corners the market in LA county, I have found two agencies who use the Floortime method (basically unheard of in the Bay Area), and both have been in operation for well over a decade.
  4. Community outreach and connection is on a higher priority in LA. I’m not saying that it doesn’t exist in the Bay Area, because it does. I am saying, though, that it is more obvious in the agencies I’ve researched in the LA area. The agencies down here overall (and not just special needs ones) tend to create and hold their own conferences, go into lower socioeconomic areas/neighborhoods, and communicate more readily with those neighborhoods. Why? Because individuals in those neighborhoods rose up and decided to carve such agencies into creation themselves.

Overall, the LA area appears to operate a bit differently than the Bay Area, which means I will have to learn the lay of the land first before really striking out to plant my business here. So far, though, I am excited with what I see.

An Autism Wish List

I’m traveling/on vacation right now, but I wanted to share an amazing post with everyone about Autism Acceptance Day. The author, who is an autistic woman, made a wish list of what she hopes to see for autistic individuals in the future. Number four particularly resonated with me, as I know that I am still working on this due to being a product of my environment when it comes to autism services. The goal of “normal” is still very much the norm, so to speak, and I would like to help change that, starting with myself. I am still a work in progress. I may do an post just on this subject in the future.

Enjoy!

https://anonymouslyautistic.net/2017/04/02/autism-acceptance-day-wish-list/