Have Times Changed?

Over a decade ago I received a message from our local Autism Society affiliate, stating that a local news reporter wanted to ask several questions about Autism and was seeking answers from Autism parents.

I jumped at the opportunity and chimed in that, "I'm happy to help."

As we set up a time to chat via phone, I remembered what other parents in similar situations shared with me - they will ask you about your stance on vaccines, so be ready.

(this is still a thing, albeit not as frequent)

Of course, I was ready. I've been answering a multitude of questions about autism for over a decade. One of the main reasons Autisable is around is to allow full discussions about autism to happen - so we can find those nuggets of truth, and the by-product of being the editor of that site is to have a pulse on what is going on within the autism community.

I worked for a highly visible global non-profit at the time, so when the phone call came, I was sitting in a parking lot during my lunch hour. The conversation went something like this (as I pull this from memory):

Reporter: "Mr. Manzer, thank you for taking the time to answer some questions. I'm working on a report about autism and need some questions answered, and I hope you can help me out."

Me: "Sure, no problem, glad to help."

Reporter: "From our text messages, I saw your site, Autisable, LLC , and see you are very active in the community. What is your connection to autism?"

Me: "My son is autistic."

Reporter: "What is your stance regarding vaccines and autism?"

Me: "Sorry?"

Reporter: "Where do you stand concerning vaccines?"

Me: "Sorry, I thought this was about autism. Before I answer, was this a question you were told to ask parents by your news director?"

[I've had several discussions with news directors and reporters by this time, so that's why I asked this question]

Reporter: "Yes."

[we had a short sidebar about the news process on their side and what they were after in finding a story. Very professional and informative. Some folks shy away from answering and discussing further on this note, but this reporter was very open and honest with me about what they were looking for in a story.]

Me: "Thank you for your honesty, but based upon what I see in the media, and what you're trying to seek to fill your story - your news director doesn't know the real story of the challenges families have regarding autism. If the story is about autism, don't bury the lead by talking about vaccines. Once that subject comes up, the story about autism gets completely lost, as it becomes a story about vaccines. It also doesn't benefit the autism community at all. That said, I think I might have a story that may be more beneficial for the community if that sounds interesting to you.

Reporter: "Sure, what's the story?"

Me: "The real story is what I call the Catch-22 of Autism and Insurance. Let me share with you an example that is rather common in the autism community...

So, our son was diagnosed as being autistic. After several appointments with various professionals, we saw his Doctor, who prescribed him over 30 hours of various types of Therapy, like ABA or Speech and OT. However, no insurance was going to pay for any of these therapies, unless they were at a clinic or at a home (not ABA) by a certified professional... but definitely not at a school."

Reporter: "Really? not one?"

Me: "Let me clarify here. We are not Military - so not Tricare. Blue-Cross/Blue-Shield will only do so IF it's done at a clinic at a Hospital (or a medical building).

Do you know how many hours a week a clinic MIGHT provide? Maybe 4, IF you're lucky."

[At the time of this interview, TriCare was the only Insurer covering any ABA therapy. I believe that has since changed]

Reporter: "Seriously?"

Me: "Yes. Our son has to attend a private school that will provide that because he isn't yet ready for another local school that can accept him. So, we have to pay over $1,800 per month to this private school because insurance won't accept this school with the same qualified professionals as the clinic.

Reporter: "So, you have to pay that much?"

Me: "Yes. Now here's the kicker... it's a catch-22 situation. Either we pay out of pocket for private school so he can get the full 30+ hours a week of the types of therapy he needs... or we list him as being Homeschooled and take him to a clinic where he may only get 4 hours of therapy a week via the route that the insurance company will pay for. So, either we pay out of pocket to get him the best options available... or we have to have only one income so one of us stays home to homeschool him and take him to those services that the insurance company deems worthy enough to give our son his doctor's prescription.

No matter the choice, the perpetual challenge of getting the necessary services remains and leaves us parents not only on a variety of waitlists, but also having to jump through a variety of hoops only to be told that the recommended courses of action lead to a lack of services for our kid.

Either way, no matter what course of action, us parents have to regularly go back to square one and start over. Hopefully, the 300th time going through this course of action may produce slightly improved results. (but doubtful)

Now, could the school district pay for this? Maybe, but often it involves the parents hiring a lawyer and going before the local court to make a case for the school to pay for it. There have to be a lot of avenues to go down before a case would be worthy of even going down that road - and none of which benefits the family or the child - due to the added time and expenses involved. So, many families, ours included - don't choose that path and just pay out of pocket to get things done. Let alone, if the court cited in favor of the family, it's most likely that the school system will appeal and not pay. At best, they do pay many years or decades later.

Reporter: "So how do these schools work?"

Me: "Well, they have plenty of state-qualified and certified teachers and professionals to apply various therapies that have proven to work to help autistic individuals succeed. However, parents of these kids, such as my wife and I, have to pay out of pocket to keep these schools running. They generate revenue from various grants, fundraising events, and donations, and often operate as a non-profit since insurance companies often don't pay on claims for the services they provide (even though they have qualified people administering those services). I can put you in touch with a few to help you with your report."

Reporter: "Please thanks"

The reporter was Lucy Bustamante . And I'll be very blunt and honest here, she did an incredible job reporting about one of these private schools in Hampton Roads (If memory serves, it was on the Peninsula). Her honesty and professionalism in addressing this subject are still worth noting. But more importantly, she listened and took what was shared to heart. This meant a lot to this parent.

(I tried searching for that report she ended up doing on this subject, however I'm unable to locate it. Maybe one day it'll pop up somewhere.)

In our situation, we were able to make it work, albeit nearly losing our home 3 times. But, we pushed through to make it happen for our son. Those few years he attended that private school he thrived on so many levels.

Although ABA has been highly touted, our son didn't receive that, but a variation of techniques derived from ABA, along with Speech and OT. The private school he attended discovered the mix of therapies that worked well for him at that time, and we eventually got him enrolled in a program that our local school districts have that specializes in working with profoundly autistic kids.

However, all these years later, the scenario I shared with Lucy still plays out regularly throughout the United States. Depending on where a family lives will determine to what lengths a family has to go through to get what their child needs to thrive. Often families go heavily into debt, divorce, or even worse (yes, much worse) - due to the increased stress of obtaining the necessary services our kids need.

When people make a statement, "How do you do it? I couldn't fathom what you have to deal with."

To this, I can only say that any parent will push to their limits for their child. The biggest battle in raising an autistic kid is not with our child. Our kids are amazingly curious, witty, sarcastic, and just like any other kid. The biggest battle we face is sharing with the world the challenges we face when trying to obtain the services that best benefit our kids. If you don't live it every day, you will never know. Even these words fall short due to the reader's perspective, but we press on.

I'll share this and more on an upcoming Autisable-Dads-Podcast episode.

Now for the Podcast News…

Don't forget to subscribe to the YouTube Channel !

Just a little reminder that because things have been busy as of late, I am scheduling out interviews - and I thank you for your patience if I haven't 'locked in' a date with you.

Autisable Dad's is available on most streaming services where you can find podcasts. Just select your preferred podcast streaming service and search for 'Autisable Dads'.

Become a Patron!

If you like this newsletter, or even the podcast and what I'm doing with Autisable, LLC , consider becoming a Patron. There's even more behind-the-scenes information, interaction, and collaboration on Patreon . Right now I'm sharing what's going on with Autisable itself, those behind-the-scenes notes as to what it takes to keep that site up and running, and more.

Thanks to Michael Klemmer of Aerial Resupply Coffee ! For those interested in supporting this journey, ARC has some great coffee to reward your support!

Visit our Patreon page to support this effort: https://www.patreon.com/Autisable

And now, for more!

Sometimes an individual and organization need a bit of a shoutout, as they are making great strides in helping the autism community in some way. Here is this week's highlight:

1. Rob Gorski - my friend and fellow Autism Dad. You can find him at The Autism Dad, LLC, and hear him on his podcast The Autism Dad, available on most streaming services.
2. Autism Radio - with their flagship show HOPE Saves the Day, hosted by Paul Cimins is on iHeart Radio nationwide, and their podcast is on many streaming platforms. They help many autism families with a variety of services available nationwide!
3. MyABA.Today - a recommended directory for families to find ABA Therapists. Also, a means for families to rate and review practices. Are you an ABA Therapist? Join and Create your listing for FREE.
4. MySLP.Today - a recommended directory for families to find a speech therapist. Also, a means for families to rate and review therapists. Are you a Speech Pathologist? Join and Create your listing for FREE.
5. MSP Design Group - a promotional marketing company that helps you sell more of your product or service, engage with prospects, influencers, and your community, and motivate your employees.

Thank you again for subscribing and being a part of this journey.