A couple of big things happened in the last two weeks or so with autism, and I wanted to compile them.
House Passes Autism Act: The US House of Representatives voted to allow $1.8 billion to be allocated to autism (research, programs, training, etc.) with the continuation of the CARES Act through 2024. The bill now goes to the US Senate, but it needs to pass fairly quickly; the current CARES Act expires at the end of September, and its lapse may mean a lapse in funds for services and research across the country.
What happened, Sesame Street?: I am in the process of writing a blog post for this, but ASAN (Autistic Self-Advocacy Network) has severed ties with Sesame Street after the children’s company teamed up with Autism Speaks for its latest round of PSAs.
“New” Ideas About Autism: I file this under “Wait, you didn’t know this?” A research team concludes that (surprise!) autistic individuals have reasons for their behaviors like lack of eye contact and often do desire social interaction to some degree.
“My experience of living with autism”: I always appreciate first-hand accounts from autistic individuals, especially since they almost always shatter at least preconceived notion I have heard from neurotypicals. This writing is from May, but I wanted to share it.
For far longer than it should be needed, a vast majority of us in the autism community have said that genetics may account for a far bigger role in autism than any of the other factors being explored. Now, a study of over 2 million people in several countries is saying similar…to the tune of 80%.
This study not only included 2 million people, but covered a 16 year span. There have been many studies confirming the same findings, but none have been this huge. And while the study is not perfect (what study is?), it is leading researchers to a new field of exploration and questions regarding the role genetics play in autism, along with the role “environmental” factors may still play.
But how does one look for a history of autism in their family, especially if there are no concrete diagnosis to be found (which is often the case, particularly in minority families)?
The key lies in education; being familiar with the symptoms and listening to that instinct that something may not be adding up on the developmental milestones.
The key lies in communication: talking to the professionals (doctors, psychiatrists, etc.) and speaking up about your concerns.
It also lies in understanding: knowing what autism is, is not, and looking at it with empathy instead of sympathy.
The links to the study and an article about the study are below.
There is also a link to my first FREE autism class happening on August 3 in South Florida, which will give you a head start on all of those aforementioned keys.
Most of my 10+ years of work have been in the autism and special needs communities as a therapist or developmental specialist. While the clients themselves (kids or teens) are the main focus, I have also been taking mental notes on trends I see amongst the parents and families. The notes have been interesting and at times, concerning.
First, there are a few common ones I have seen across all of the families, regardless of race, location, or socioeconomic status:
If it’s a two parent household, the mother often feels like she is carrying the weight of the autism journey. Granted, this seems to be the feeling in a lot of two parent households in the non-autism community as well, but I hear it more often overall with this population.
The parents feel as if they have to fight for every service, meeting, and opportunity that they can get.
A lot of parents/guardians feel lonely.
If the entire family becomes invested in helping their autistic family member succeed, the client usually does (and often goes beyond what any of us professionals may have thought they could do). These cases taught me early on to never underestimate my clients.
Since my change of scenery from California to Florida, I have now started noticing trends that I knew little to nothing about before, but always suspected. In Cali, my population was mostly white with some Mexican families included here and there. Here, the clientele is mostly African-American with some Latino families included here and there (mind you, my therapeutic population is not autism-based here, but mental health based instead). Some of the things I’ve noticed:
The children in the black community in general are getting diagnosed much later than their white counterparts. We’re talking *years* later. Early intervention has been proven time and time again to be critical to helping autistic individuals with navigating this really insane, overstimulating world of ours. The later the diagnosis, the more intense and prolonged treatment may have to be.
Professionals aren’t listening to the minority parents/guardians. Many parents have told me that they “had a feeling” that something was different about their child, only to have their primary care doctors brush it off and say, “They’ll grow out of it.” This has directly led to the first bullet point above this one: delayed diagnosis.
Minority parents/guardians often feel alienated in their own communities. They don’t feel that they have anyone they can talk to, and that few others know their experience enough to even provide support. This diagnosis is still considered foreign in many of these communities.
Incorrect myths and assumptions about autism are still quite common. This also leads to delayed diagnosis.
Below are some links to different articles and studies about this disparity in the autism community as a whole. Our services here at SPARC Guidance aim to improve the situations in the minority communities in particular.
African-American and Latino Children Often Diagnosed With Autism (ASD) Later Than Their White Peers: There is one quote in particular from this article that I wish to highlight, because it speaks to another trend I have noticed since working here in Florida: “In 2007, a study by a team at the Center for Autism and Developmental Disabilities Research and Epidemiology, University of Pennsylvania, found that African-American children were 5.1 times more likely to be misdiagnosed with conduct disorders before being diagnosed with ASD.” (Rentz, 2018). Also, kudos to NPR for recognizing and correcting their article regarding how they classified autism (see their correction box at the bottom of the article).
If you wanted to know why I’m leaving the therapy field to focus more on autism education and empowerment in my community, now you know. 🙂
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.
On Saturday, I had a chance to do a “paint and sip” afternoon. I wasn’t even going to go at first, but was talked into it by a childhood friend of mine. The experience gave me an interesting look at creativity, our self-identity, and how willing we are to deviate from societal norms.
For these events, we are usually given a beginning sketch, and then are walked through how to essentially duplicate the picture. It’s a genius idea, because the steps are explained in such a way where you would have to really try to mess it up. It’s nearly fool proof. This picture, titled “Golden Goddess,” featured a black woman’s facial outline and shoulder. Everything else would have to be painted in.
I started deviating a bit from the start. I mixed the colors for the skin tone a bit differently, and I decided that I wasn’t going to give her a curly afro like the example because I wanted her to look more like me. I also wasn’t going to be too crazy with her makeup because, again, that wasn’t me. I found myself wishing that I had blue instead of green paint so that I could make purple and really let loose on the color scheme.
Strangely enough, it never crossed my mind to ask for blue paint.
I knew what elements I wanted to add to the painting, but I didn’t because I didn’t feel that I had the resources or access to them…even though there was plenty of blue paint on one of the counters at the front of the room. I didn’t think to ask and instead just sat, wishing.
While in the midst of this mini-crisis, I starting looking at the others’ paintings. Most were following the instructions to the letter. Then I saw one woman who had clearly decided to go a different route. Her finished goddess ended up with pinkish-red bushy hair, a green top instead of a red one, and roses around her instead of circles. It looked awesome.
My finished goddess looked like a halfway point between the example and whatever I wanted. I love her, but I know that she can be more.
I then started looking at more pictures from the business of other painting parties. I was genuinely curious at how few people tried to deviate from the presenting pictures. There were several where I thought, “Oh, I would’ve added these colors, maybe changed that background into this.” When it came to the painting of a black woman, though, I saw the highest number of deviations to have the subject look more like the painter. So why didn’t I see such deviation with the landscape or object painting classes?
No, I’m not answering or looking to answer that question. This is more simply food for thought. How willing are you to paint outside the lines? Do you prefer to follow the norms, or pivot a little? How much do you pivot? How does art help one deviate a bit more than usual? If you know what you want to create, how willing are you to pursue it?
UC Davis’ MIND Institute is launching a study about anxiety and autism for children ages 8-12 years old. They are looking to see what types of treatments are best for these individuals. The focus seems to be on CBT (Cognitive-Behavioral Therapy) versus medications. Participants get free treatment and apparently $100 for each assessment performed. This is mainly for those in the northern California area.
Here is the link to the video discussing the launch of the study:
You can also check the “Research” tab on the study’s page to see all of the studies they are currently running. I have heard several people from the MIND Institute speak at various events, and I love the work that they do.
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 email@example.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!