To diagnose or not? Many parents ask me this question. It is one of the more popular questions I am asked. I will tell you this, I truly believe there is not a right or wrong answer to this question. Every person, child and family is unique and has unique lives and needs.
With that said, my own families journey brought me to pursue a diagnosis for my child. With my background as a case worker for adults with disabilities, and a PSW, I didn’t know for sure whether my child may need assistance in their future, either financially or with care, sometimes there is no way to know that. But, I did know my kiddos needed help socially. At a young age he was struggling with sharing, being the boss, back and forth dialog, and emotional outbursts that lasted well over an hour sometimes. I had to pursue what could be done to help me parent him and bring about success in our lives and to thrive.
We went to my son’s PCP and asked for a referral to a well known testing facility in the area. They sent a referral after I begged them to and I explained my sons challenges he was having in the areas of social and emotional regulation. He was three years old. What follows is not everyone’s same journey, as everyone’s path down this road is different as I have witnessed. In the next few years we went to SEVERAL facilities for testing and assessments. We finally were able to obtain an ASD diagnosis by me reading a book by Tony Attwood, called the “Complete Guide to Aspergers.” I said, this is it! I wrote down all the characteristics of Aspergers, matched them to my sons behavior by writing down examples of how he exhibited those symptoms, and sought out a doctor who could medically diagnose ASD. I called around to a lot of facilities and doctors. I did all of the researching and seeking out answers. No one else helped or assisted me. The doctor was a Behavioral Pediatrician. This was not an easy find and I was so thankful to find her. She agreed and after a few appts. she gave him a medical diagnosis of ASD Level 1 and ADHD. He was nine! It took six years of many appts., thousands of dollars and empty words by what I believed were very capable specialists in their fields. I do not know exactly why it took such effort other than my child presents very well and is outgoing. At least that is why at four years old, the Educational School Districts office that evaluated him denied eligibility of services, as they said his IQ was too high for services such as head start and to be placed on an ISP/IEP. But as he entered school and the challenges in areas of social and emotional regulation occurred, I continued to advocate for a diagnosis so he could receive accommodations. Y’all, I was desperate and I didn’t give up. Like I say, GO WITH YOUR GUT AND DON’T GIVE UP~
After he received the diagnosis his school still wouldn’t provide accommodations for sensory breaks and such, so we moved, changed schools and found a better fit that supported him! What a journey it has been! I am so thankful that I didn’t give up as he was provided many services and resources that wouldn’t have been provided had he not had a medical diagnosis of ASD and ADHD.
The medical diagnosis obtained from a medical professional is needed to qualify for SSI and/or Social Security benefits for a lifetime if qualified. For IEP/504 plans at school a medical diagnosis is very powerful and holds the school to the fire legally to followed. For possible group home or in home care needed in their lifetime say in case you are not able to or they cannot live independently. for Vocational Rehabilitation services to gain employment if desired. For some behavioral health therapies such as Speech or Occupational Therapy, etc. to be covered by insurances. Etc. Etc. Many of these services and resources are helpful and needed in childhood or prior to 21. After 21 years of age, it is more expensive and challenging to obtain an ASD diagnosis.
I think that as a parent we have to consider all options and provide the best life and support to our kiddos. I asked this question many times when I was a case worker doing Person Centered Planning, “What will happen to your child if/when you are not around?” I hated to ask that at first, but it is so needed to help us prepare the best for our kiddos and their amazing lives ahead of them. We want them to have the best life possible, with as much support and facing things with a strong circle of support!
Diagnosis is not for everyone, I agree. We absolutely have to do what we feel is best for our kiddos for sure. And that may not include diagnosis. I wanted to post about this, as someone who has been through it and you could see a personal account of it. If you have questions, reach out and let’s chat about whether it makes sense for you to pursue a diagnosis for your kiddo!
