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.
There is a lot of emphasis on data in the autism field, especially since Applied Behavior Analysis has a monopoly on the field right now (unfortunately). Everything is data driven, meaning that numbers must support everything. Success is measured in data. Research is (of course) measured by data. Intervention techniques soar or crash based on data.
So what happens when the data confuses people?
A recent study on autism prevalence in 4 year-olds is doing just that, because some of the data doesn’t make sense. For example, if the number of diagnosed kiddos below age 3 decreased in New Jersey, then why is the prevalence number increasing? One possibility is that the number of professionals trained to diagnose and treat autism is low and not increasing with the demand. Having been in three different metropolitan areas in the last 3 years (Bay Area, LA, and Palm Beach County), I can attest to this suggestion. There aren’t enough of us.
The link to an article about the study is below. New Jersey was one of the states examined because it appears to have the highest prevalence in the country right now, but also has a huge array of resources. They also said that because of this, NJ probably has the most accurate information in the study.
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.
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.
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!
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 firstname.lastname@example.org 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!
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.
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?