After the Autism Diagnosis: What Should I Do?

A friend’s child was recently diagnosed with autism and she reached out with some questions for me. “What would I do differently after getting the diagnosis that my son had autism, knowing what I know now?” And, “What did I recommend doing now that they had a diagnosis of autism for their child?” My sister then called to let me know my niece had just been officially diagnosed with autism, and asked, “What should she do?”

After the Autism Diagnosis: What Should I Do? https://www.autismparentingmagazine.com/autism-diagnosis-what-to-do/

When my son was diagnosed with autism, I really didn’t know anyone with a child with autism. I didn’t know people with autism (or so I thought). It’s a very isolating and confusing place to be. This is one of the many reasons I share our autism journey. I don’t want any other family to feel that they are alone out there. I want them to know there is someone who they can ask questions of, someone who will do their best to help.

What would I have done differently?

I would have worried less about a lot of things. He couldn’t write at all at age five when he was diagnosed. His speech was still a work in progress. When doctors would ask if my son met his developmental milestones on time, I always reply “sort of.” He started learning to talk, walk, and everything else on time. He just took a lot longer (like years…) to finish honing those skills than other children.

Knowing that maturation happens at different times with different children, if I would have let myself believe that, I would have saved myself a lot of time grief. My son can write just fine now (albeit slow), he can talk and has a voluminous vocabulary, he can walk (albeit is still liable at times to walk into walls or stumble). His progress is slow but he does progress. (If I could just get current me, to listen to old me about not worrying as much…)


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What would I recommend doing?

First, get on the wait list for ABA (applied behavior analysis) therapy ASAP. The wait lists are usually very long but this is the one therapy that is worth the wait and has helped the most when we could get it. In the meantime, occupational therapy (OT), physical therapy (PT), speech therapy, equine therapy, and aquatic therapy depending on your child’s needs are good places to start and can be helpful. Discuss these options with your pediatrician.

Second, take the time to grieve and process the diagnosis. Know that your significant other will likely process the news completely differently than you and in their own time. Give them the time and space to do that. Take time to spend time with and love on your child. This is still your child no matter what diagnosis the doctor throws at you. Your dreams for this child just might have to take a little bit of a course correction.

Third, take care of you. This is going to be a marathon, it is not a sprint. You need to conserve your energy. Taking care of you means not just indulging in your favorite treat (though I do recommend it on occasion), but taking your vitamins, finding time to for prayer or meditation, seeking ways to help you grow. This is what is going to help you survive the grueling days ahead of you. This is what is going to give you the strength to continue to fight on to help your child. If you don’t take time for this, you will crash and burn. Trust me, I’ve crashed and burned a few times. Slow and steady wins this race. You’ve got this.

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This article was featured in Issue 82 – Finding Peace This Season

Calleen Petersen

Calleen Petersen says she's an ordinary mom who has a child with autism, and a husband in law enforcement and the military. She spends her spare time advocating for special needs families. Calleen writes about her family’s life and her thoughts while residing in Washington State. For more information visit www.anordinarymom.site

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Rob Smittenaar - April 23, 2019 Reply

Ik don’t understand why only referring to ABA. There are more proven forms of therapy like Floortime. A PLAY – based therapy build on parent involvement, building relationships. It’s fun to do and helps the child in his socially and emotionally development.

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    Calleen Petersen - April 23, 2019 Reply

    Hi Rob,
    I have experienced floortime therapy with my child as well. In our case play therapy did not work for us because our son would just script the movies he had seen with the toys and it would be the same every week. We invested a lot of years into it and I adored our therapist. But for our son with Autism it wasn’t the right fit. It wasn’t that Floortime was bad, it just doesn’t work for us.
    I know that there are many people out there that have some bad things to say about ABA. I’m not in it to get more eye contact or get someone to appear more “normal.” How ABA has helped us is to deescalate violent situations and to help him function better by helping us get him out of bed and to school.
    ABA isn’t going to “cure” or make everything better, but I have found that it has been the therapy that has helped in these areas the most for us.

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