This is going to be rather short, because upcoming blogs will go into far more detail on that title.
The straight answer: I will not support an organization where a vocal majority of the demographic that it claims to help and support abhor the organization.
Yes, I’m talking about Autism Speaks, the organization that started this campaign.
One of my biggest goals over the past several years was to listen to autistic voices more, because I noticed that there was a huge lack of this in the provider/treatment side of things. Full disclosure: I supported Autism Speaks at one point. I even participated in two of their walks.
That was then. I educated myself and, most importantly, started listening to autistic people. The result was that my viewpoints on a lot of assumptions about autism (specifically autism and treatment) drastically changed. The biggest change was my view on Autism Speaks, which continued its history of problematic behavior by being tied to singer Sia’s universally panned movie, Music. Sia admitted this on her Twitter before she left the platform after being pretty nasty to autistic people who pointed out the laundry list of offensive messages in her work.
Good lord, don’t get me started on Music. We’ll be here all day.
All of this being said, I don’t believe that the phrase “autism awareness” needs to be tossed. Hardly. I work with and meet people from all walks of life everyday who still do not know exactly what autism is. So, awareness is still needed.
We also need acceptance, though. Autism Acceptance is the phrase preferred by many in the autistic community. It is the view that rather than focusing on “curing” autism or masking characteristics, autism is to be accepted as part of who a person is. This viewpoint is represented by the color red (the awareness side is represented by blue).
I will be posting fully about why I am not in favor of Autism Speaks, by way of autistic creators and allies who have gone into great detail explaining their track record (Spoiler alert: It’s not good). I will also go into more detail on how I feel autism awareness can be respectfully built upon.
This month, please look into other autism-related organizations to donate, fundraise, or walk for.
One of the most important tools that you can have as a provider when it comes to children with delays, special needs, and/or autism are visual aids. These will help in routines, choice making, transitions, and general expression. The different types become increasingly more creative as we go, with the first being an actual system you can order, train staff in, and implement. This is by no means an exhaustive or extremely detailed description of the different visual aids you can use. This is simply a list to give you some ideas. For many of us in the autism field, these aids are part of our everyday vernacular. It would be amazing to see them used in preschools and daycare centers consistently!
PECS (Picture Exchange Communication System)
This is one of the most common forms of visual aids with regards to autism. It consists of a system of simple picture cards with a simple word or phrase. I have seen this system used as physical cards and on tablets and AAC (Augmentative and Alternative Communication) devices. This system was developed by a PhD and a speech language pathologist, and it has a protocol that includes elements of ABA (Applied Behavioral Analysis). The PECS system can be utilized with a number of conditions where the individual may have difficulty communicating. This is also probably the most expensive option, as the training manual alone could run you around $70 USD.
This one is definitely the simplest visual aid to include. If the child can read or is learning how to read, then simply labeling important items in the classroom (which many providers do to some extent already) can help the child navigate the classroom. These can also be used in conjunction with the next type.
These are a more detailed variation of the PECS idea, in the sense that you the provider/caregiver can easily make these yourself. Small pictures of everyday items (with labels if you choose) can go a long way with children who are non-verbal and may not have learned any signs yet. Ideally, you want to use pictures of the actual items that the child sees everyday, along with pictures of common places or activities. These can also be put together on a schedule board. Speaking of which…
Schedule Boards/Time Icons
There is often some form of a schedule board in a classroom, even if it’s mainly for the provider. Using picture icons to create a schedule for the child can help them anticipate what is coming up next in the day. Along with a board to put the activities and transitions in order, you can create “minute cards.” One of the first preschools I worked with created small cards with 3 and 1 minute increments on them (“3 more minutes,” “1 more minute”). They would show these cards to the children in the minutes leading to a transition/end of an activity. Even though the kids couldn’t always count the minutes, the cards were color coded as well (Ex: yellow for 3 minutes, and red for 1 minute). These cards made transitions easier for everyone.
In one of my previous positions, I was one of the go-to people if someone needed a social story. These simple stories can cover anything from a daily routine, to making friends or dealing with loss. I would often create them using Powerpoint and customize them to the child’s favorite characters or activities. Then, I would print them out in color and laminate them before binding it together into a makeshift book. One child who was nervous about going to preschool and making friends loved Pokemon, so I created a friends social story for her using Pokemon pictures. She loved it so much that she asked the Behavioral Interventionist to read it to her whole class, and it became part of the classroom library. Oh, and yes, she learned how to make friends!
A Few Tips
If you have access to a laminating machine, this can help seal the pictures and stories so that they last longer and are more durable.
Encourage parents and caregivers to use a similar system at home. They can take pictures of preferred and everyday items to keep on their phones or tablets. This way, there is a ready supply of visual aids to help them identify what the child may want or need.
Use the corresponding word or phrase associated with the picture so that the child starts to learn the word. For example, if you use a picture of their sippy cup, say “cup” when you hold up the picture.
Make sure you have their attention when using these aids. You may have to place it in front of them, or drop down to their eye level.
If you have other examples of visual aids you have used, please tell us about them in the comments! Next week, we will take a look at sensory aids!
In talking with local organizations and providers, a common thread has emerged. There are a lot of questions about how to setup their daycare centers and preschool classrooms to better serve autistic children or those with sensory needs and concerns.
At first, I was thinking of doing one blog post to cover this topic, but I quickly discovered as I wrote that each possible inclusion could be an entire blog post on its own. So, since I haven’t done a blog series in quite awhile, I felt that this would be an excellent time to do a new one called Ready Your Class. While this series is aimed at providers, parents can also use this to help them identify certain traits within a daycare or preschool that can make their child’s days much smoother.
The main areas of interest that I will be focusing on through the posts are: Visual aids, sensory needs, environmental factors, and staff. This is by no means an exhaustive list, but I think these main areas go a long way in making daycare/preschool days less stressful for kids and adults alike.
The first post, Visual Aids, will go out this week on this site, LinkedIn, and the SPARC Facebook page. I look forward to giving providers some ideas for new tools and setups in their classrooms!
A recent report from the Centers for Disease Control and Prevention (CDC) here in the United States has confirmed what I think a lot of us in the field have suspected for awhile. While the above link is to the report itself, you can click here for another summary of the report by Disability Scoop.
First, the rate of autism has increased from 1 in 59 to 1 in 54. The CDC believes that this is more than likely due to the increase of identifying and diagnosing.
When it comes to racial breakdown, the report states that for the first time, the rate of prevalence is the same for white and black children. This seemingly debunks a long-held mindset within my own community that “blacks don’t get autism.”
Now, the differences pop up when it comes to the age of diagnosis. While black children have made minimal gains here (meaning that they’re starting to get diagnosed more), they are still behind their white counterparts with regards to the age of diagnosis and start of services (meaning they are still getting diagnosed later). Worse still, hispanic children are behind both white and black children with regards to diagnosis.
Another difference is the access to services and early intervention. The report mentions that there continues to be a gap between services obtained by white families and services obtained by minority families. The age at which these services are obtained also appear to be different, with white families getting a diagnosis and early intervention sooner.
One of the goals of SPARC is to minimize these gaps. So, tell us: what would you want to see from SPARC to help bridge these gaps?
Below is a link to a blog post about Steve Asbell’s Autistic Masking Quiz, which asks questions to help adults determine if they have been “masking” their autistic symptoms, or perhaps to help someone identify if they’re possibly on the spectrum at all. I hope we can eventually get to a point where the “masking” isn’t needed, and doesn’t cause the potential mental harm that comes from denying your true self.
I wanted to post this before releasing the next workshop flyer, because this symbol has gotten a very mixed reaction from the autism community…and rightfully so.
The puzzle piece has become a standard symbol for autism worldwide, from representing entire organizations to being featured on necklaces and bumper stickers. For both sides of the coin, it symbolizes autism being a bit of a mystery, a puzzle to be solved and completed. For some, it represents hope that answers may be found. For others, it is dismissive of their lives and experiences.
For SPARC and its mission, it represents something entirely different.
The purpose of SPARC is to educate, and though we don’t adopt the puzzle piece as our symbol (nor will we ever do so), we embrace a different meaning for it.
For SPARC, the puzzle represents connecting the pieces for minority communities.
It means connecting “stranded” families to resources and assistance.
It means establishing support systems for those on the spectrum and their caregivers in these communities.
It means linking a community together in awareness, acceptance, affirmation, and advocacy.
So, when you see the puzzle piece on any flyers or marketing for SPARC, know that it carries a completely different meaning for us. It doesn’t represent autism itself, but rather represents underserved communities being given much needed tools to assist with autism.
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.
I remember watching this show a lot as a child. Just to further date myself, I remember the Big Bird movie “Follow That Bird,” and I can faintly recall visiting Sesame Place in Texas before it closed.
So of course, seeing one of my favorite childhood shows stepping up for families and communities warms my heart. They have so many great resources and tools online for families of all types, including those touched by autism. Topics include autism (of course), community violence, financial education, and more! This website is a treasure chest of information, activities, and even professional development webinars. If you haven’t visited it yet, the link is below. The more resources, the better!
The Miss Florida pageant is about to get its first autistic contestant.
I included a link to the article (which includes a video) below, but much like the concerns that rose from Kodi Lee on “America’s Got Talent,” the reaction of the newscasters was a bit…well, if you watch the video, you will see what I mean.