Why My Autism Ally?
This seems like a logical place to start.
Why? Well I’ve seen a lot things in my 16 years of parenting a child on the autism spectrum. Lots of great things and some things that could be better. But I’m starting to get a sense that part of the system is breaking down due to the fact that there are more autism services being offered than ever and more options for each of those services. And because there are more services, each provider will be knowledgeable about only their particular service. For this reason, it is harder now for families that receive an autism diagnosis for their child to access the complete range of services than it was when my child was diagnosed, and it shouldn’t be. Don’t get me wrong, we need these services. The more services there are, the more choice for families. And choice is good, since services should be available in every area, not just in the city and concentrated in certain zip codes. Autism affects people in rural and urban communities and services should reflect that reality.
When my son was diagnosed at 2 years old in 2003 there was 1 ABA center in Fort Wayne. We now have 10 and many of them have multiple locations. In 2003 there was only one physician group who diagnosed individuals with autism Fort Wayne. Now there are dozens, but only a handful diagnose individuals with the testing required in order for you to obtain state waiver services. When there was just ONE, everyone knew who that ONE was and their ONE office could direct you to the ONE agency that could help you. Fast forward almost 20 years and there is more, a lot more. Yes, more is better, especially since there is a huge increase in diagnosis rates- in 2003 - 1:150 children were diagnosed with autism in Indiana, now it’s 1:59 and probably lower than that, but that’s another blog post :)
Remember, just because someone offers autism services or has autism in their business name, does not mean that they have employees that really understand how the whole disability system works or that they are aware of all the available options for families. Even worse, some providers feel they have a financial incentive to not tell you about other funding options. Their employees and therapists are experts on their part of the system. Yes, they’ve heard about lots of programs, but their job is to stay up to date on the things that are related to their field. And because they don’t have the time to stay up to date with the ever changing laws and services, some agencies may be giving families “outdated” information. I still encounter people who think that you have to wait 10 years or more to get state waiver services for their loved on on the spectrum, but the actual wait is 9-12 months. Guess what? Your opinion of those services changes. What was originally thought - out of reach and why bother, is now something you want to get to work doing right now!
This is why I chose to start My Autism Ally. My goal is to help individuals, families and our community learn more about all of the options for autism services, create training opportunities and events relevant to the autism community in northeast Indiana. The autism journey can be difficult to travel and you need a “team” of professionals to help you. Especially since what works for one person with autism, may not work for another. But you also need to use your team wisely. Just like it wouldn’t be effective for a quarterback to kick a field goal, it’s not effective to ask your therapist to explain to you the in’s and out’s of special education law or ask them for help filling out the application for waiver services. Is it the really the best use of your child’s therapy session to talk with your therapist about services he/she isn’t really familiar with? I’m sure your therapist knows something about the topics, but is it the most up to date? Are they the most knowledgeable person to ask? What if they answer your question with “I don’t know.” Who are you going to ask then"?
I hope you’ll ask My Autism Ally. My Autism Ally wants to be a part of your team. We are committed to making sure that you get the right information the first time so you can use your time more effectively to achieve the goals and dreams you have for yourself or your loved one on the autism spectrum.