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 firstname.lastname@example.org if you have any questions or want to suggest possible topics for future workshops!
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!
You probably noticed that I didn’t say “Autism Awareness Month” or “Autism Acceptance Month.”
Over the course of the past few weeks, while others were shouting about this month from the rooftops, I was pretty quiet. There were two reasons: for one, some major changes were happening personally as I shifted my entire focus to this business. Second, I honestly wasn’t sure of what to say. Listening to numerous families recently helped me find something to say.
For many communities in my country (the United States), both awareness and acceptance are still minimal. You may think that by now everyone knows all about autism, but this is not the case. Hardly. So, I cannot just call it an awareness or acceptance month, because neither has been achieved in the communities that I wish to serve.
I’m not really going to say much more, because I want to recognize the voices of autism itself. I highlighted some of these folks last year, and I want to do that again this year. Below are the blogs and Instagram pages of autistic individuals and families with autistic members that I follow or like to read. Please read their posts, content, and experiences, because they can say far more than I ever could!
Also, if you want to add your voice to the list this month, comment below and I will update this post with your Instagram page, website, or blog through April 30th. If I get enough blogs/profiles, I may create a permanent list on this site!
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. 🙂
Parents with kids and teens on the spectrum are starting to notice the range of different experiences they are having with regards to education, at least in my home county. While this is a goal further down the line for SPARC, I am fascinated by how a school district can have such extremes in providing services for those with special needs. The private and charter school sector has similar range of differences, leading to parents trying school after school in hopes that they actually provide the services that they say that they do (because I’m learning that this isn’t always the case, either).
Right now, I am looking at what is available in my county. I hope to start reaching out in the spring and summer to these programs already in place and help them connect better to minority communities. There are some great resources out there that many do not know about. I hope to change that and help bridge some obvious gaps. This is honestly Stage Two in SPARC Guidance’s plans, but with Stage One in its testing phase already (on an individual basis), I want to start laying groundwork for the next steps.
There will probably be some future posts on this topic as I learn more about what is available for families in the school district and the community.
Just because you cannot see the movement, does not mean that movement is not happening!
This can be a tough one for me, and I think for many who consider themselves to be Healers and/or Helpers.
*Thought I’d add a little Halloween fun to this one*
As we move into the holiday season, and as Christmas stuff and fluff starts to pop up everywhere (already), I think it’s important that this little reminder is revisited.
Do not try to be everything for everyone this season.
Do not push yourself into a breakdown trying to appease others, no matter who they are.
Do not feel guilty for saying “no” if it is to take care of yourself. Most of us know our internal signs of being spread too thin, so when you start to see them, that’s your cue to cut some of the chaos back.
Do feel free to walk away if someone is not hearing your request for peace. I’ve had to do this a lot in the last few years, and I’m doing it now. If you respectfully state why you can’t invest time, money, or energy into something, and they ignore that request, then your feelings in the matter are not important enough to them. Seek out those who respect your desire for balance.
Do give yourself the all-important “me time.” Even if it’s a few blocks worth of a walk, 2 minutes in the car, or a 5 minute cup of coffee in silence, carve it out. Those little moments add up.
Do what you can and/or must to show yourself some love. All of the other statements above roll right back into this: love yourself.