Why trying to get autism services sucks and what you can do about it big a bigger world

Where to begin

I have to admit, I’m really bad at beginnings and it’s not just when it comes to getting autism services for my son. For example, my lovely wife has been writing her heart out about our family on this blog for months and I’m just now beginning to write 1 post.

Or take for instance when my wife had suspicions about autism in my son and I decided not to get him evaluated. Even though Dana protested, I made the call to cancel his appointment that we waited 7 months to get.

Maybe it’s just that beginnings sometimes invoke a fear of change, or maybe I just tend to procrastinate. Either way, I’m here, and it’s time to talk about where to start when getting autism services for your child.

Know where to look

This gets a lot of parents, I know because it got me for so long. When we had suspicions about Logan’s autism, my response was to call doctors and medical providers that had autism or the alphabet soup related to autism somewhere on their website, without knowing a lick about the system.

Now, this was before Logan was diagnosed and around the same time that Dana was constantly telling me something was wrong. I would say on numerous occasions:

We don’t need a diagnosis to get services. All providers care about is getting paid, so we’ll pay them out of pocket for services until we know what’s going on.

Well, that was a classic example of me making things harder than they needed to be. Some of my close friends and family would likely tell you that I tend to do those kinds of things. I just call it getting things done but to each their own.

Bottom line, save yourself the frustration and get the diagnosis. Delaying Logan’s diagnosis was one of my biggest regrets in life. I know, I know, you don’t want your kid labeled with the big A or any other label, what parent does? Especially us Dads. But if I can get past it, so can you.

I wised up, after all, Logan is currently in a private preschool for ABA therapy and has been through numerous programs up until this point.

Find out which services your kid needs

There are a couple ways to go about finding the services your kid needs. Be sure to have a good idea of what those services are and how frequent they need them before you start your search. Every provider has their own opinion about what therapies your kid should receive and how often. This is because… Wait for it… I hope you’re sitting down… Autism is a HUGE gray area! Yep, I know it’s hard to believe, but it’s not as straightforward as what you would imagine when you think of a medical condition.

Start by finding the recommendations or treatments portion of your kid’s actual diagnosis paperwork. The doctor should have laid out some specific services and frequencies for those services on that document. If not, get that doctor on the phone, or go there in person to get this information. It’s standard stuff that all doctors should provide.

Do some brief research about the specific diagnosis and the services recommended, BUT and that’s a big but, be careful not to go down this rabbit hole. There is loads of information on the internet about autism, etc. and you can become easily overwhelmed. Focus on ensuring you understand the doctor’s recommendations. Services may include, occupational, physical, or speech therapy and/or behavior interventions. You will likely work with a provider to fine-tune these. Having this idea will help you avoid providers who want to provide services that are either not appropriate for your child or are fluff that they are using to run up your (or your insurance company’s) bill. Yep, I said that.

Find who can provide those services

father an son wearing cycling helmets

When you have a general idea about the services your child should get, start by deciding based on your situation if you will be going through insurance, paying out of pocket, or a little bit of both.

Insurance companies

If you will be going through an insurance company, which I assume is most common, then leverage them. Pick up the phone and call them. Tell them which services your child was prescribed and ask for local providers. This saves you a ton of time randomly picking a provider, filling out the ridiculous amount of paperwork they require only to find out that they don’t take your insurance.

Ask the insurance company to email or mail you a list of providers in your area. I had a couple of providers that I contacted who tried to tell me that they didn’t take my insurance, but I got to be the first to inform them that they do.

Your child’s doctor

If you don’t have an insurance company at your disposal or you’ve already contacted them, then give the provider that diagnosed your kid a call. Ask them for referrals to providers in your area.

Also, ask who they specifically recommend. I had a hard time even getting Logan’s doctor to get back to me. We found the doctors email by using their first and last name in the email format the provider used. But, that seems like the status quo considering the shortage of providers, which we will cover later.

The internet

Do a quick Google search for those autism-related keywords in conjunction with the specific services that you’re looking for. This can be difficult sometimes because there is limited information about providers in rural areas.

Heavily populated areas should have more information about providers available online. This is only a preliminary step and you don’t want to assume just because they do ABA therapy or the like that they are reputable. Loga has had multiple speech therapists.

Just compile a list from your internet research, name, contact info (phone number, email, social media), and location so that you can refer back to it. And if you have a similar experience as me, you will be referring back to your provider list often.

Word of mouth

Also, like anything else, ask around. Consult friends, family (if they understand whats going on…), work colleagues, your pediatrician, etc.

Treat your search like you're the search engine, and you're trying to compile the most information so that your kid gets the best provider possible. #autismservices Click To Tweet

We were lucky, in our case Dana being a nurse gave us some additional insight and connections. She also leveraged high school friends and people on social media. Don’t discount the importance of who you know.

It’s all about volume

Once your experience with being a human Google has generated a substantial list of providers and such, start contacting them. Yep, I know that was obvious, but like I said earlier, I’m bad at beginnings. As a matter of fact, be contacting these providers as you find them. The more the better.

One thing I learned from this process so far is that it costs you nothing to inquire about services. A provider will actually have to provide the service before it costs anything. So, start making those providers work for your business. When I say its all about volume, well, it is. You’ll find that some providers are not accepting new patients, just stopped taking your insurance, are actually out of business, etc. So, don’t wait around until you’ve researched the “best” one before you contact them. The earlier you start the process the better, and we’ll talk about why later.

I was in the queue for 3 or 4 providers at a time, waiting for return phone calls, or for them to email paperwork. Just expect a good percentage of providers to fail at some point in the process. And no one likes to start again, especially not me…

Also, don’t take the word of 1 representative of a given provider. I mean, sure, be pleasant. They want to call you back? No problem. Just ensure that they have your correct contact information and get an approximate time period to expect their response. Asking when you should be expecting them to respond sometimes saves you from the proverbial black hole called the bottom of the paperwork pile.

Now that you got a person on the phone from that provider, you’re done, right? Nope. Do you have additional contact information for them? Well, use it. Contact the provider through all means possible. You are trying to get services for your child that could very well determine the rest of their life, so no reason to rely on a provider’s responsiveness to determine that.

Don’t waitlist my kid

As you can see from the title, I despise waitlists. I understand why they occur, and I’m sure they frustrate many other parents, but man, they still suck. I can tell you that they will likely be a part of the process when you try to get your child services. Knowing that your kid will likely be on one doesn’t make it less frustrating, I think it’s just good to know what to expect. It’s not even a matter of who cares and doesn’t as some believe that a provider’s level of caring has something to do with where their kid is on the waitlist.

I’m sure providers would have zero waitlists if they could because it would mean more patients, which would bring in more revenue. The problem is that there is just not enough providers to meet the demand. While I think things would be a little better if providers became more efficient in how they process patients, it wouldn’t change the fact that there are not enough, period. And there is little incentive for prospective doctors and therapists to choose a track that leads to services for autism.

Understanding the problem had very little to do with how I addressed it, but that’s just me. See, I set out on a mission to get my kid the services that he needs. Providers, on the other hand, have to attempt to treat all patients fairly. While I feel for kids and their family that gets waitlisted for what seems like forever and might actually be doing some harm to the child, you know, the whole “early intervention” thing, I am responsible to my son first and foremost.

I certainly hope that I will advocate for other autistic kids and their families in my daily life, but as for my son, I am his biggest advocate (well… the other biggest advocate). I would encourage you to realize that at the end of the day, you are responsible for the timeliness of your child’s services. Sure, you can blame it on providers and their waitlists, but it really boils down to you, the parent. I have not and never will just accept that a 7 or 3 or even 1-month wait is acceptable for my son when he needs those services now.

So, if you’re still there after my rant, I do have some practical advice for you. If you get waitlisted, and you likely will, then get to the meat and potatoes of the issue with your provider. You may have to be a bit resourceful, using some of the methods we discussed so far and others to get your providers attention.

Don’t take the word of any 1 representative. Don’t be afraid to reach out to managers, administrative staff, or even doctors. I would never encourage you to be less than courteous when dealing with providers. As the old adage goes, you get more flies with honey. But, you should be firm, persistent, and relentless in getting your child services, even with medical providers.

For example, Logan was scheduled for his autism assessment (for the second time, thanks to me) and we were told that he had to start the 7-month waiting period over again. Of course, I contacted a number of individuals in the organization, to include a director. Our pediatrician had referred Logan to a specific doctor within the practice because, at that point in time, Logan was exceptionally difficult to diagnose. I kept reiterating over and over again that we had been referred to that specific doctor and should not be subject to a waitlist for new patients wanting general evaluations. I was successful in moving up on the waiting list and reducing our wait to a month or two.

Treat your situation as unique, because it is. Don’t let a provider make you feel as though you are just another parent with a kid that needs to wait their turn in line. Always personalize the situation by discussing your child’s unique challenges with the provider everytime you have an interaction. Also, be sure to reiterate the importance of early intervention.

Always be looking

father and son on beach in ocean city md

I like to think that I am continuously evaluating every organization that I do business with. While the supermarket may just be the closest one and you shop there out of necessity, most other interactions with businesses will require ongoing evaluation to determine if continuing to do business with them is in your best interest. Autism service providers are no exception to those business rules.

Remember that list of providers that you compiled? You will likely have some backups when things are all said and done, we did. It took us a while to get to the point where we had multiple providers to pick and choose services from. Just know that from a pure business standpoint, having multiple options is an ideal position to be in compared to the alternative.

That all being said, Dana and I generally think long and hard before changing providers because Logan tends to make the most progress after building a bond with a particular therapist. We still have a list though and we have used it before.

I will also mention, do your best not to rely solely on the public school system for all of your child’s services. I do believe Dana wrote a post recently detailing just how difficult it can be to get appropriate services through public schools. I certainly understand if the public school system is all you have at a point in time, you do what you have to do, we were there. I’m just saying, be looking for outside services to give yourself more options and leverage if and when the school system tries to deny services.

Summary

I covered quite a bit in my first post, what can I say, I’ve been saving it all up… Just to recap, we talked about:

  • Don’t be like me, get started!
  • Know where to look.
  • If need be, just get your kid evaluated, stop fearing a label.
  • Find out which services your kid needs and how often they need them.
  • Look up providers via insurance companies, your current providers, the internet, and word of mouth.
  • Remember, the more providers you contact, the higher your odds are that you get timely services.
  • Waitlists suck. Don’t always accept standing in line for services, advocate for your kid.
  • Always be evaluating your current providers and looking for new ones.

Get that list of providers, stash it wherever you keep stuff like that, Google Docs, smartphone, the refrigerator. Always be discussing your child’s therapies, certainly with their therapists, but also with a circle of individuals that give you the advice you can trust.

boy sleeping on father's chest

Your child won’t benefit if you don’t put yourself, as the parent, out there and get into the weeds of getting your child autism services. Now get out there and get those services!

Leave me a comment below with your experience, tips, and suggestions regarding getting autism services for your child.

Feedback about Big A Bigger World, in general, is great as well. Since I am the tech guy, let me know what you think of the website. Is there anything you would like to see? Anything you would like us to write about? I look forward to hearing from you!