Newly Diagnosed….Now what??

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 what ABA can do, they usually don’t know how to get started. Most parents who contact me are confused and frustrated, and still emotionally processing the Autism diagnosis. 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 person differently, and an Autism diagnosis is somewhat like a gemstone with many different facets and depths to it. There is no blank “Autism prescription”.  

 I am so-o-o-o happy to share this information with a wider audience. Information is only helpful when it is shared, so give the information in this post to anyone you may know who needs ABA therapy but maybe they’ve never heard of it, or don’t know where to start.

I'm going to generalize a lot in this post because ABA services vary so greatly based on location, and funding source. Here is a very generic guide of how to begin ABA therapy:

- 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, which will include hiring a private BCBA.

-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.  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 a pre-authorization for services the funding before therapy can even start. 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 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. 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 big 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 an annoying and overwhelming commitment. 

ABA therapy takes a lot of hard work and generalization from family/parents.  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 services.

**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 to reduce challenging behaviors while waiting on therapy services to begin.