A Family’s Experience

We recently sat down with one of our wonderful families to learn about their experience with an early diagnosis and ABA therapy. Here’s what they shared!

Meet Angela, Doug and their family!

Do you recall a moment in which you first felt concerned about your child’s development prior to them being diagnosed with autism?

D: I didn’t see the signs initially, whereas Angela previously worked with kids so saw some delays. For example, he didn’t talk and didn’t respond to his name, but I wasn’t thinking Autism.
A: I didn’t think autism at all either, I honestly thought he was deaf – and then we got a hearing test and it was clearer that it was ASD or something else.

What were some of the first signs of autism that you noticed in your child?

A: Outside of language delays, we saw him putting two things together all the time, like me and Doug, toys, the swings and just thought it was a quirk he had that was sort of cute.

What was your experience in regards to your regards to your child receiving a diagnosis of autism? Did you first meet with an EI team, your pediatrician, etc.?

A: We got EI due to the language delays and when they first came in – our provider as pretty blunt about the potential of an ASD diagnosis which was honestly upsetting to have a label just thrown on him without formal assessment – it really threw me off. EI was a great resource to get us on the right track, but the 1:1 services weren’t enough for what G. needed, and what we needed as a family.

When we went to the Pediatrician, they gave list of phone numbers and referrals for ABA, but we found out quickly that you can’t get ABA without an ASD diagnosis. It truly felt like it was impossible to get him any services without a diagnosis. Our pediatrician is amazing but I don’t think they understood the full process (e.g. diagnosis, EI, ABA etc).

What was something you had difficulty with during that time?

A and D: Getting a diagnosis because it took forever. We attempted to go through Boston Children’s and it was tricky because it seems like they are overwhelmed with so many kids, and we knew we couldn’t wait.  Gino had a lot of behaviors at the start without his language, and he really needed the support so we got a referral for Touchstone, and while we had to pay out of pocket, we got the evaluation and were able to start getting more resources.

D: I really wish that there as a program for parents who are waiting for diagnosis just to get something that is more than EI – the hardest part was just waiting and feeling like you’re wasting precious time.

What was something that helped you during that time?

A: Getting the diagnosis was the most helpful looking back. I remember the day he got the diagnosis and feeling so relieved because it finally opened up the doors for getting the help our child needed after waiting for so long.

Did you know anything about autism prior to your child’s diagnosis?

D: Angela had worked with kids with ASD – but I think you don’t really know about it as well until its in your life. 

A: I didn’t know much about ASD except for what I saw at work, and really thought it was one specific thing – that my child would be a certain way. Which ended up not being the case!

Once you identified a specialty service provider, what were your expectations?

A: Our only expectation was that we just wanted to get him services ASAP. We didn’t know how to address the unsafe behaviors and his delays in language.  There was a lot of time we felt like we had no hope to help him be successful so we just wanted someone who could help.

Was your experience with ABA what you expected? How so?

A and D: We knew it would be intensive but we didn’t know how much progress he would make. Within the first month we felt we were listened to, supported and we saw progress with G! The amount of support we got was more than expected, all of his team members have been such a help and are invested in him. I thought he was going to head-banging and be hurting for the rest of his life – and now he has really opened his world and has come so far!

What is something you wish you knew before starting ABA?

A: That my family and kid were going to be okay and be supported. 

D: It’s going to take a lot from you as a parent, and you have to be involved and learn how to communicate differently –  it takes some patience, time, and understanding, but it’s okay because you’re going to get the support you need.

What is something you wish other people knew about Autism?

A: That it’s not scary- people tend to shy away and they look at them differently but just know they are full of life and my child is a sweet little boy.

Do you have any advice for parents who are just starting in Early Intervention?

D: Try and listen to your child and their needs and show them as much support as you can. Take in all of the resources and all of the help you can get to make your child more independent and successful and happy. Also, don’t be afraid to reach out to other family members or others in the community ask questions or to get that support – there is so much different information it can be a lot and even be wrong based on your situation or providers. 

Lastly, we as parents need support too. We were really fortunate that we have the structure we do for G, but there are parents working full time, or that can’t be there 24/7 – it is important for them to take time to be with their child but also for themselves. It is so important to have a community around you so you can be successful.