S4 E10 Identifying What Autism Families Need
I’m cautiously cynical these days.
My in-laws gave me a sign to hang on the wall in my office that reads “Sarcasm, just one of the services I offer“. Yeah, they know me well. Maybe it’s a GenX thing, I don’t know. Some of us are just built this way.
(On a side note, I put it as a free service available through my official Facebook page. At the very least, feel free to give that page a like – cheesy plug, I know.)
In one of my cynical moments, I noticed an ongoing trend over the years as people kept sharing with me various research studies. So this week, I dive into this subject a bit, and as a result, I’ve identified specific areas where families need help, and research isn’t really one of them at the moment.
Don’t get me wrong, I’m all for appropriate research needing to be done, but let’s just put this in perspective, shall we?
Millions of dollars are poured into autism research, and although I know that will and should happen, it does very little to help families of autistic kids in the here and now.
Over the past dozen years, people have emailed me research papers that focus on causation. These research papers are interesting but don’t help families pay the bills, or get services. They can also be rather frustrating. In my first few years as the editor of Autisable, I received emails from people, or articles being sent to me, that seemed to point blame on everything from pollution, to types of foods being eaten, as well as to anything else under the sun.
There are thousands of ‘contributing factors that could potentially be the ’cause of autism’. So, when I’m asked where I stand on any of these subjects, I have a simple response: Stop.
Stop focusing on causation, let the researchers do their thing, but stop promoting potential contributing factors until they discover something truly illuminating. Although it’s encouraging that people are taking the time to research this topic, the reality is it does nothing directly to help autism families in their daily lives.
The bottom line I have to ask people who aim to do these research studies is this: How does this help my son right now? Most of the time, it doesn’t.
It’s nice that organizations do have a focus on research, and when they do discover something truly worthwhile, we are notified. However, unless it helps answer specific questions for the parent of an autistic child at that moment, it doesn’t help and will get lost in the large pile of other research studies already done. It’s also a bit frustrating that some research papers may contradict other research that was done (or it appears to be that way). So it leaves us parents not bothering to read them anyway.
The reality is, most autism families don’t really care about causation. What we do care about is how to help our kids to be the best contributing members of society that they can be, and these research studies, although pretty cool at times, typically aren’t the type of content wanted by the community… unless there is something compelling with it.
For example, one study that was sent to me years ago was about air pollution, and how families who live closer to an interstate had a higher prevalence rate than those who didn’t. Another paper shared about what a mother ate impacted the child’s development, potentially contributing to a diagnosis of autism. Now, how does this help? How does it help to share research that appears to ‘pass blame’ of a child’s autism diagnosis onto the parents not doing everything ‘perfectly’?
This is not to say that there are not studies trying to solve issues. One research effort I’d like to offer as a highlight of being worthy of our attention is dealing with auditory-visual processing – and how it may be able to help autistic individuals in many ways. I’ll discuss this very topic in a future episode of Autisable Dad’s.
However, let’s just say, how most of these studies are done, and what they ‘discover’, doesn’t typically help or encourage the autism community when they are shared. It often discourages parents, as if they are the reason their kids are autistic… with only a limited amount of evidence.
Now, don’t get me wrong, all this research is necessary, and I wouldn’t want to dissuade anyone from researching if breathing causes autism, but I digress… so let me focus on what I’ve learned over the years, first-hand, as a parent of a child who is autistic, and someone who has been involved in the autism community for over 15 years.
During this time, I’ve noticed specific needs within the community that we are desperate for, and I’ve also noticed how businesses and organizations have exploited these needs for their own profit. Yeah, it’s a thing.
The good news is that there are a lot of great things happening within the autism community, including keeping those exploitive practices in check. There are people wanting to provide services, wanted to share insight, and want to help parents and families in many ways.
Due to the fact that autism parents and even professionals have reached out to me asking for these needs over the years, I’ve identified where autism families need help the most. I’ll do a deep dive into each area specifically, and separately, in separate podcast episodes.
Now, just about all of what I’ve observed over 15 years, and being a part of the community for all this time, I’ve identified 3 areas where families need the most advice and assistance.
These are Legal needs, Finding and learning about Therapies, and Financial planning.
I can’t tell you how often, over the course of 15 years, that parents have sought my advice on dealing with their kids school, or what to do with estate planning, what a special needs trust is, or how to handle the police or CPS. My response for years has been that they need to find a lawyer in their area that can help them with their legal issues. Many parents also don’t know what rights they actually have when addressing an IEP, and that the IEP can be reviewed by a lawyer.
One autism mom in texas had some serious issues with her kids school, and needed legal help. She reached out to me and thanks to some folks I’ve met over the years, I was at least able to point her to someone who could find her a lawyer to assist with matters specifically associated with her situation. As a result of her situation, and that of many other families, we’ve started an initiative with Autisable to help parents with an affordable way to have a law firm on retainer to help assist with any of their legal means. I’ll dive further into this effort with my friend Michelle Babitz on this effort, as well as what else she and her partner Robin are doing for the autism community in an upcoming episode.
Another area is addressing Therapies. Finding a quality therapist, as well as learning more about what to expect with a specific type of therapy, are things that many autism parents reach out to me. Addressing this issue has uncovered so many things in associated with how business is done in the realm of ABA, Speech, and Occupational therapy that I never knew – even after 15 years! Parents and professionals have shone the light in recent discussions as to what is working, and what isn’t working, for their. kids. Actually Autistic Individuals have expressed their concerns as well – and they are being heard. The initiative we’re taking at Autisable has been over 2 years in the making, and I’m pleased to dive further into it in a future podcast episode. I’m confident this effort will be an incredible tool to help autism families in many ways, and that professionals can benefit as well.
The last area is that of financial needs.
Now, this topic has it’s own share of challenges, as each family’s financal needs and abilities are very unique. However, starting off with some discussions and basic education will at least shine the light one what courses of action a parent can take. At the very least, it will help provide some initial direction and what questions to look out for and ask.