Autism and Genetics

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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.

Article on Study: Majority of autism risk resides in genes, multinational study suggests

A summary of the study itself in the Journal of the American Academy of Child & Adolescent Psychiatry (the full study has to be ordered through the Journal): Recurrence Risk of Autism in Siblings and Cousins: A Multinational, Population-Based Study

SPARC Guidance FREE “Hello, Autism” Class!

1st “Hello Autism” Class Info!

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We are excited and thrilled to announce that our first community class, “Hello, Autism” is set and ready! Here are the details:

Class: Hello Autism, the first class in SPARC’s community training series

Date: Saturday, August 3, 2019

Time: 2:30-4:30pm

Place: Mandel West Palm Beach Public Library at 411 Clematis Street, West Palm Beach, FL 33401 (Hibiscus Room on the 3rd floor)

Cost: FREE!

RSVP: Email sparcguidance@gmail.com with your name, number of attendees, and zip code. You will also be added to a mailing list to get updates on this and other classes from SPARC, including parking/transportation information.

PLEASE NOTE: RSVP is required for this class, as there is VERY LIMITED seating for it. We can only take a maximum of 20 people for the class. Preference will be given to those in the 33407, 33404, and 33401 zip codes. Don’t worry, though; if enough people email us, we will definitely arrange another class in the near future. Those who attend this class will receive a discount for the second class in the series, which focuses on the school system and autism. Please visit the Classes page for more information about the various class series.

 

Why SPARC Exists

These two recent stories, each with widely different results, illustrate very clearly why this company exists.

 

First, to train more people to respond like this:

Mother credits Universal Orlando employee for helping calm autistic child (click on the “see more” in  the mother’s Facebook entry for her entire story…it’s worth the read)

 

And second, to train more people to refrain from nonsense like this:

Teacher mocks autistic student with ‘most annoying’ award

 

Kudos to @UniversalORL for the actions of your obviously well-trained staff!

And to the Bailey Preparatory Academy and the Gary Community School Corporation…I’m available to offer autism trainings. 🙂

 

Spectrum: A Story of the Mind

I strongly encourage everyone to watch this video, because it is amazing. I agree with Dr. Grandin in this film; we should focus on the sensory input just as much, if not more, than the social skills when it comes to autism treatment. It’s about 23 minutes long, but so worth it. I may make this required viewing for my workshops in the future; I like it that much.

Also, the last adult interviewed in the film is Nick Walker, one of the first autistic adults that I had ever met. I actually had him look over my thesis proposal (which was about autism and multiple intelligence) some years ago. He was also the first person to make it clear to me that most adults like himself refer to themselves as autistic, not “a person on the spectrum.” I was pleasantly surprised to see him in this, and yes, he is very good at Aikido!

If the embedded video does not appear (it was acting funny while I was writing the post), then the direct link is also below.

Spectrum: A Story of the Mind

Autism and Employment

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WebMD released an article this week about the expectations and experiences of work for  adults on the autism spectrum. While the study has not been peer-reviewed yet, it does appear to offer a solid look at what the office environment feels like for a population who is (unfortunately) still trying to get their foot through the door.

I appreciate the fact that one of the biggest takeaways from this article for me was the fact that autistic adults were not completely sold on the idea of formally training employees about autism. This was mostly because they did not want to be singled out. This was also listed as the reason that they were hesitant about having a different rate of pay. While my trainings have been with non-profit volunteer teams who regularly interact with autistic individuals or families affected by autism, I can understand the hesitation of having an “autism training” at a for-profit company. It’s something for me to think about, for sure.

It is an interesting article overall, and the findings were presented this past Wednesday at the International Society for Autism Research’s annual meeting. The direct article link is below.

https://www.webmd.com/brain/autism/news/20180509/what-helps-adults-with-autism-get-and-keep-a-job#1

A Letter To Disney

Over the last few months, I have been both amazed and greatly encouraged by the amount of autism awareness that is starting to be raised in the private sector. While other parts of the world have certainly been ahead of us Americans in that sense, we are starting to realize the potential of a workforce that companies have not given much of a chance in the past.

Disney has been a regular source of enjoyment and bridge-building for many of my clients, regardless of their demographics. Being a Disney kid/adult myself, I personally know what impact it has. I remember the joy (again, as an adult) at seeing an African-American Disney princess emerge on the scene with The Princess and the Frog. The Disney brand has significant clout in the world, and that includes the autism world within it. For many of the families I’ve worked with, being familiar with Disney gave a clinician a much greater chance at earning the trust of our clients.

The article below is from an autistic adult who now speaks with corporations and organizations to make the case for hiring his demographic. He also does an aspect of what I like to do, which is train the current workforce on working with autistic employees and coworkers.

A Letter To Disney

The Bridge: About Behaviors

This is a topic of interest for me, so much so that I created a training for professionals on dealing with “difficult” behaviors in clients. When it comes to autism, difficult usually refers to behaviors that are inconvenient, unnerving or harmful, or possibly embarrassing.  They range from persistent flapping to self-harm, and cover all points in between. The bottom line with all of them, however, is usually the same with families and adults who work closely with the clients: they would like the behaviors to reduce or stop.

In the training, I challenge my colleagues to become detectives first, and to view the behaviors from the eyes of our client. So, let’s take a new client, Paige. She is 14 years old, and nonverbal. She does not yet use any devices to communicate, aside from occasional pictures similar to PECS.

Paige often takes off running for no apparent reason. Sometimes it is just into another room, but sometimes it leads to her running towards traffic or out of the family home. Her family have no idea how to stop it and are deeply concerned for her safety. There are two things that need to be addressed almost simultaneously: Paige’s safety and the reasons behind her running.

A safety plan may be set up immediately, and nothing punishing is involved in it. Doors are kept secure, and someone stays with her regularly until the next step is engaged. At the same time, we start walking through a loose version of ABC (Antecedent, Behavior, Consequence) Data collection. This is one of the aspects of ABA that I actually like, because it brings in the detective aspect. We start examining all the events immediately leading up to the bursts of running, and I document them. After a few minutes, a pattern is noted. She tends to run when a large number of people enter the room she is in (about 3 or more). This is especially true if she is given no warning (for example, if neighbors or family members unexpectedly drop by). If Paige did have a device to communicate (or was verbal), I would more than likely get her input as well.

The family and I develop a plan to let Paige know when to expect an influx of people. We also let her know that if she gets overwhelmed, she can squeeze a trusted adult’s hand to let them know that she needs a break. Her receptive language has proven to be high, so we all believe that she definitely understands. This gives her some autonomy to tell us when she is feeling out of sorts, rather than us just assuming. After a few test runs, Paige is able to squeeze to alert her family. Within about three weeks, her running has reduced by over 50%.

For many behaviors like this, there is an underlying reason that we may be missing. It is usually something that a neurotypical individual would never guess, because it is not something that normally bothers us. This is why I like to reiterate how many neurodiverse brains tend to filter very differently from our own. This sets up a better sense of understanding from families and caregivers, and allows them to become better detectives and listen to their neurodiverse loved ones’ cues, whether they are verbal or not.

Next week: The behavior discussion continues with a look at the actions that aren’t harmful, but still baffle many of us. Have a great week, and feel free to email me with any questions/comments at sparcguidance@gmail.com.