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The earlier you start receiving services the better. ABA is the standard of care for autism treatment. ABA doesn’t just help children who have been diagnosed 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.
Early Intervention state programs can be called 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.
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. 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.
Another common shared belief 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 what evidence supports. Once a child reaches a certain age, gains can still be made, but it is much harder to catch up to their neurotypical peers and programming is more focused. There is no cure for autism but the treatment is most effective the earlier it is started. 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 get evaluated until they start school and you can see why ABA for school aged children is much harder for parents to secure. Don’t get discouraged and keep calling other providers. Get on as many waitlists as you can if there are significant waitlists.
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” meaning 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. Your experience is entirely valid and 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 everyday 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 and the spectrum needs to be represented all along it. For some, autism is seen as their gift but for others unfortunately that is not their story.
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