After the Diagnosis

For years I have received emails or phone calls from parents wanting to begin ABA services for their child, and full of more questions than answers. Even for people who know how ABA therapy can help, they usually don’t know how to get started. Most parents who contact me are confused and frustrated, and still dealing with their emotional state after the diagnostic appointment.

Some parents have told me they wish the Autism diagnosis came with a fact sheet, or road map of what to do next. That would be pretty difficult to do. Autism impacts each child differently, and an Autism diagnosis is somewhat like a gemstone with many different facets and depths to it. There is no “Autism prescription”. The treatment package will vary from one child to the next.  

I'd also like to add, it's important to not confuse the diagnosis of Autism with a death sentence. There is no need to demonize the diagnosis; it is simply giving you information about how your child's brain works and functions. No professional can tell you that based on a diagnosis your child will never talk, have friends, attend college, etc. Professionals are not prophets, and they cannot predict your child's future.

I'm going to generalize a lot in this post because ABA services vary so greatly based on location. If your child is newly diagnosed and you want to pursue ABA therapy, here are some general steps: 

- The first thing you need to do is locate the ABA providers in your area. There may be agencies that send therapists to your home, private Autism schools, or centers where you drop your child off for therapy. If your child is under 3 there should be free Early Intervention services available to you, although early intervention doesn’t always offer ABA.  Contact the ABA providers to determine who has availability. It isn’t uncommon to contact an agency and be told there is a long waiting list. This can actually be a positive, because it means the company doesn't have adequate staff to cover cases. Instead of cramming a heavy caseload on their staff, a company will start a waiting list and take the time to hire quality staff. If there are no ABA providers in your area, I suggest starting your own in-home ABA program. Parents will often ask me where to go to find ABA therapists. There is no easy answer to that question. You may need to put up flyers on college campuses, ask other parents for recommendations, or hire non-trained individuals and pay a Consultant to train them. The average hourly rate for an independent ABA therapist is $14-$20/hour.

-Sometimes if you get a referral or contact individuals through your insurance, the roles of ABA providers are not properly explained. Here is what I mean by that: usually an ABA Therapist and a BCBA do not perform the same tasks. Often parents contact me after getting a referral and they inquire about starting ABA therapy. I then have to explain that I provide case supervision and consultation; not direct 1:1 therapy. Which can be highly disappointing to families. Are there BCBA's who work 1:1 with clients? Sure there are. But typically, if you are new to ABA what you want are ABA direct staff first, and then once you have a team in place you want a BCBA to supervise everything and create the treatment plan.

- The next step will be securing funding. The provider will inform you if they accept insurance, Medicaid, have a sliding fee scale, offer scholarships, or they may even tell you about grants available in your local area. If there are Regional Centers in your area, they are the ones who typically pay for ABA so you should contact them first. If the provider does accept insurance, you may have to secure the funding before services can even start. This is because sometimes insurance companies take months and months to approve services, so the provider may need to determine up front that the insurance company will actually pay the claim. If you live in an area without ABA mandated services, you will need to locate funding sources yourself, or possibly pay out of pocket for therapy.

- Now that you have a provider and funding, you are ready to begin ABA therapy. Whether the provider comes to your home, or you take your child to the center/school, you (by “you” I mean all caregivers) will need to receive ABA training. For many agencies and companies this is mandatory—families cannot begin therapy until they have completed initial family training. If you are working with an independent contractor (they work for themselves, not an agency) then I highly recommend you request initial training from that person. If the independent contractor is not qualified to conduct trainings, you may need to receive training separately. It will be very important that the family learn how to apply the fundamental techniques of ABA. In order to see the most benefit from the ABA therapy, the family must reinforce what the therapists are teaching. This will be very hard to do without ongoing caregiver training.

- Lastly, what is most important about beginning ABA therapy is understanding that ABA is a lifestyle change and a commitment. It isn’t something you “kinda sorta” do. You will likely have a team of professionals coming in and out of your home several times each week, and it can be annoying, frustrating, invasive to your privacy, and overwhelming. Its also important to remember: ABA therapy shouldn’t stop because the family moves to a new home, the ABA therapist is sick, the grandparents are visiting for Thanksgiving, or because school starts. When the ABA providers are not working 1:1 with your child, then guess who is now the acting ABA therapist? That’s right, you are.

ABA therapy is a commitment, and I can quite honestly say that parents who don’t understand or agree with that commitment do not see the progress they are expecting to see from ABA therapy.

**Quick Tip: For those of you still on the fence about if ABA therapy is necessary for your child, I suggest reading my “What is ABA?” post. 

Awesome Resource:  "A Parent's Guide - Before Starting ABA Therapy" This 31 page eBook helps parents learn what they can do, right NOW, to help their child learn and improve while waiting on therapy services to begin.

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