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!
At first glance, the logo for SPARC seems pretty basic.
If you have followed the blog for awhile, though, you may have already discovered the “hidden message” inside of the logo, especially its “spark.” The colors chosen were not an accident. I believe I briefly went over them in a previous post, but I wanted to review the color choice in more detail.
The color blue stands for autism awareness, and it is usually seen as the “official” color for the movement. It comes with a bit of weight, however, as many autistic individuals find the color/movement to be dismissive of entire sections of individuals and not fully representative of the autism community. There is also seems to be a disconnection between the autism workers (who overwhelmingly support this color movement) and the autistic community.
This leads us to the color red, which was adopted by members of the autistic community to represent autism acceptance. This is a little different than its blue “companion.” The autism acceptance movement features an idea of “not us without us,” the valid premise that change and acceptance has to involve and include the very population it is supposed to help. This color/movement also seeks to include the factions of the autistic community who may have been ignored or unintentionally excluded from the “blue movement.”
Finally, we have SPARC’s color of purple. Purple, of course, is created when blue and red are mixed together. I wanted SPARC to take the positive aspects of both movements, and honor them as one. We can push for both autism awareness and autism acceptance, so long as it is done in a manner than includes the very voices we neurotypicals claim to support, and promotes a healthy expansion of knowledge and resources. The two movements do not have to be at odds with each other, nor do they need to belittle one another. I hope for SPARC to grow into an example that honors the best of both movements, and recognize that both are needed to fulfill the third and fourth A’s of autism…Affirmation and Advocacy.
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?
April actually has two meanings, depending on where you stand in the autism community.
For most who work in the field, it is Autism Awareness Month: a month of “Light It Up Blue,” fundraising, and quoting a lot from Autism Speaks. It’s about posts of what autism is, the therapies designed to assist in it, and helping families affected by it.
For many autistic individuals, April is Autism Acceptance Month. It highlighted by the color red, shared personal experiences, and quoting a lot from each other. It’s about posts of what autism is really like, programs for autistic adults, and what the future holds for them.
These two shouldn’t be so different, but they are.
With SPARC, I find myself a bit in the middle. I have grown understandably wary of Autism Speaks since speaking to and listening to autistic individuals, and I definitely feel that not enough focus has been made on involving autistics in the autism conversation (at least not here in the United States). At the same time, I don’t think we’ve gotten past the awareness stage yet, either. There are still huge pockets of communities that don’t know everything they could know about autism. Awareness just has to be done correctly, and with respect rather than ignorance.
I think both need to be focused on, without being at odds with one another.
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.
When I’m quiet, it usually means I’m up to something big, and I was!
SPARC and Riviera Beach BRIDGES are teaming up to offer a series of FREE workshops to the community! The workshops will cover a variety of topics, including:
Dealing with behaviors
I am really excited that we were able to offer these for free, because that is always a concern on my end. These workshops will be in rotation at the BRIDGES location for the next several months, so don’t worry if you miss any of them the first time. You can register for the first workshop through the Facebook page, but it is not required. It will help with headcount, though. The first workshop will be an overview of developmental delays, and is on October 16th at 11am.
Please feel free to drop a question in the comments or email me at email@example.com if you have any questions or want to suggest possible topics for future workshops!
Don’t worry, though, it’s for good reasons! There has been a LOT of planning going on!
I’m not going to say too much just yet, as we are still in the finalization stages, but I will say that SPARC is preparing to team up with another great organization in the Riviera Beach community to offer not one, not two, but multiple SPARC trainings to the public, for FREE. I am beyond excited about this, and once we have everything solidified, we will definitely be announcing the details!
We aiming for an mid-October start, so check back here or like our Facebook page for updates!
Lesson of the day to fellow entrepreneurs: Get to know those in your community, and make your presence known as much as possible by attending local events (armed with business cards!), and connecting to those you have common ground with. You literally never know where your next opportunity or partnership may come from!
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.