The pathway to find treatment for your child with autism can be a challenge. Here’s what you should know before you start.
I was recently in a community conversation around barriers to accessing ABA services that families face. There is so much information out there especially when you have a child with a developmental delay or was on schedule developmentally and had a sudden loss of skills. There are so many forms to fill out and your attention gets pulled in all directions. What you really want is what’s best for your child. How do you sift through all the information to find an autism treatment provider that works for you and your family? There is no one size fits all answer to this complex question, which is why you get a mountain of resources in the form of well meaning lists. Those resources are all incredibly valuable, but still overwhelming.
What I would want to know about ABA as a parent of a child with a developmental delay is… Don’t Wait.
The earlier you start receiving services, the better. ABA is the standard of care for autism treatment. ABA doesn’t just help children who with autism: ABA can help anyone* because it targets behaviors. Everyone that is living and breathing behaves. ABA works with you to prioritize goals for your child’s unique and individual goals starting with the most important. For one child that may be reducing self injurious behaviors, for another child it may be learning how to learn in a group setting.
Another common shared thought across providers and parents is, “I thought they would outgrow it.” This is usually said with the best of intentions, but with autism specifically, this is just not supported by evidence. Once a child reaches a certain age, they can still make significant gains, but it is much harder to catch up to their neurotypical peers, and often their programming is more intense. There is no cure for autism, but the earlier you are able to find treatment, the more effective it will be. Don’t wait.
Don’t sit on a waitlist unless you have exhausted all options. And if you have to be on a waitlist, then why not be on multiple? This applies to both evaluations and ABA services. There are providers out there that do have openings especially for comprehensive or early intervention services. There are far fewer providers that offer ABA to school aged kids. Pair that with the fact that many children don’t receive an evaluation until they start school and you can see why ABA for school aged children is much harder for parents to secure. Don’t be discouraged – keep calling other providers. Get on as many waitlists as you can if there are significant waitlists.
Early Intervention in ABA is not the same as Early Intervention (EI) state programs
Early Intervention state programs can go by many names: Infant-Toddler services, Birth to 3, Early Childhood Intervention, Regional Center, Early Start, and more. These programs serve a wonderful purpose in identifying children with delays. However, some families fall through the cracks and connecting families to the right resources can be challenging.
Most*** state EI programs do not diagnose autism**. Early intervention in ABA refers to the type/intensity of ABA that is recommended for young children diagnosed with autism also referred to as comprehensive. “Intensive” in ABA refers to the number of hours recommended per week (25+ hours). The time between when autism can be accurately diagnosed and the time a child starts school is when the most significant gains/outcomes can be achieved. Evidence has shown that the earlier a child receives ABA paired with comprehensive services, the more likely that child is to have long-term and significant outcomes that positively impact their quality of life.
How do you access ABA?
Look for a testing psychologist in your area that can evaluate your child. The psychological evaluation they do is what you will need in order to know which services will most benefit your child as well as to be able to access those services. Reach out to your insurance for a list of testing psychologists/diagnosticians in your area.
If you are privately paying for the evaluation, you can google search any of the following terms: child psychologist, testing psychologist, child psychological evaluation or testing, plus your geographic area. Call each one and ask them what their specialty is (ages and areas of specialization) and for others that they know of if they aren’t a good fit. Their network is going to be more comprehensive than any google search and there is a subset of psychologists that specialize in children and autism testing.
This will help you find the right autism treatment for your child. It’s like going to a specialist like a cardiologist for heart testing: the more specialized the provider, the more accurate their assessment will usually be.
Not everyone’s story is the same…
There is a phrase that I remember when I first started working in ABA, “If you’ve met one person with autism, you’ve met one person with autism.” What this means is that autism is a spectrum. Autism can be hard to distinguish from highly gifted on one end and severely impacted by autism which looks entirely different. Some people severely impacted by autism may have no vocal verbal language and need constant care to keep them safe.
No matter what it looks like, your experience is entirely valid. Finding a network that is experiencing the same thing as you can be extremely beneficial for you and your child. Join support groups, look for online parent groups, talk to other parents that you see every day in the waiting rooms of your child’s appointments. Just because your journey doesn’t look like someone else’s doesn’t mean it isn’t just as valid. Representation is important all along the spectrum. Ask questions and advocate for your child. Don’t wait… be the voice that your child needs.
I am not a clinician and my perspective comes from working alongside providers and community partners to address the challenges that families face in our communities. I truly hope this helps you as you navigate your own journey!
*Insurance will not cover ABA without an autism diagnosis in most states
**Medical diagnosis required in order for insurance to cover ABA. School diagnosis not accepted by insurance providers for ABA.
***Check with your state on whether or not your state EI program diagnoses autism