Hamlet was confused, but you shouldn’t be.

When we were first starting our family’s diagnostic journey for Tony, I had some people express to me that I should not be seeking any sort of diagnosis for him because those labels follow a person for life. And I have been asked by some their opinions about whether or not someone they know and love should go through the diagnosis process for deficits they have noticed.

Now, I am very comfortable sharing my views (former High School Opinion Page Editor), but as always, my answers to these questions are my own and anyone can leave them here without causing offense of any kind to me. As a mom and a writer, my sole reason for coming forward in any way publicly is to be a resource for others. I don’t even check the stats each week on my blog…I’m interested in neither popularity nor profiteering with this endeavor. And while I do try to lighten some of our experiences up as much as I can and still be a servant to the truth, I know sometimes it’s not cheery stuff to read even then.

I am going to suspend my love of word sculpture for the moment, because I want to make sure the only thing that is showcased in your mind is the loved one in your life that may have caused you to ask me or someone else those types of questions about being diagnosed with certain conditions. Because that is where everything should start: that person’s needs and/or wishes.

I am a fan of recognizing neurodiversity, but if your loved one has deficits that are or could prevent them from caring for themselves or living an independent life, unless you are fabulously wealthy on the scale most of us are not, this sweet spirit whoever he or she is will absolutely need a diagnosis to get the additional support needed to learn these skills. The therapies required for helping an individual can be prohibitively expensive, and insurance companies and alternative funding sources aren’t going to pay for a thing without proof of an actual condition and substantiated need.

I’m not talking about being concerned about flapping, toe walking, rocking, lining things up, or spinning. As much as others may find those things odd, by themselves they do not prevent anyone from having a successful or meaningful life. I will tell you honestly I don’t spend a second of my day worrying about my son doing these things either- we have no shortage of more significant problems to be addressing with our therapy time. And, at least in the part of the country I live in, higher functioning individuals on the spectrum are considered too high functioning for most therapy services to be a covered benefit.

In my mind, the only time there should be a question mark about diagnosis is if the person has no significant functional deficits that would limit his or her independence. Quite frankly, many “neurotypical” adults have minor limitations and problems of some form or another with certain skills. At that point, the wishes and needs of the individual need to be considered. Will it give them a peace of mind and an explanation they need to be OK with themselves? For some, carrying the baggage of a diagnosis will not bring them that or be worth it to them, especially if they are already motivated to self-improve in the areas that matter to them.

I really do believe we need to stop defining one another by our labels, and that higher functioning individuals may not find them necessary or useful and should be given the choice about how they want to define themselves. But I also think real harm can be done to a child where genuine skill deficits exist if a family delays diagnosis or treatment for fear of being seen as only the label or, as we have come to find, an ever expanding list of them.

Tony has major deficits, so in my mind, there was never any doubt about the usefulness and necessity of every diagnosis he’s ever been given. And they do just seem to keep coming for us. We received Dr. Hunt’s report after the visit with his new developmental pediatrician (I wasn’t kidding when I said getting results on certain testing can take some time). As you may notice by looking at the picture of part of the report, we picked up an additional diagnosis, and the specifics of that is mostly a topic for next week.

I will acknowledge I felt the pain that comes from having my child handed one diagnosis after another with “severe” as part of the designation. However, I also did not indulge myself in wallowing. I immediately tried to focus on how I could use this new information to improve my therapeutic approaches and interactions with my son so that I can give him the very best help available. The insights those test results gave me were worth every penny and every label for improving my knowledge of how I can support Tony.

Sometimes, when you have a kiddo with genetic disorders that dramatically increase the risk for certain medical problems, like heart defects, I think it is important to balance symptoms and testing with quality of life considerations. His geneticist and I discussed this again just this past visit. We talked about how Tony’s not at a point with his sensory symptoms where he could tolerate an echocardiogram without anesthesia. He is completely asymptomatic for heart conditions at this time, so any heart defect would be minor, and she said that when that is the case cardiologists only monitor the individual initially as immediate medical interventions aren’t warranted.

Since Tony struggles with the effects of anesthesia, and he’s terrified of medical procedures, she told me to just send her an e-mail the next time he has a dental cleaning scheduled and she’d add an order for this test so that he only has to be anesthetized once. Seriously, Dr. L is awesome and we adore her. I appreciate that she cares about the entire well-being picture for Tony.

Sometimes you have to rush in right away and diagnose, sometimes you don’t. Know your child or loved one. Know what is developmentally appropriate at each age for important skills. And if important developmental milestones aren’t getting met, push for evaluation if need be. Initially, believe it or not, I had to do just that (I can be quite pushy when I need to be). And I don’t regret it for an instant.

A Couple More Tips For Parents

You can look here for some guidelines on normal development by age:

https://www.cdc.gov/ncbddd/actearly/milestones/index.html

Regarding testing: If your child is like Tony and has a dramatically different performance in public places and for strangers, if at all possible you need to get any educational or IQ testing done in the home. Critical decisions about services that should be provided an individual are made using the outcomes on these tests, so you definitely want the most accurate outcomes possible. Tony does things at home you’d never dream he was capable of if you saw him only in an examiner’s office.

If you live in the metro area, Dr. Hunt is a great resource to be aware when that is the case. For those of you who live elsewhere, there may be qualified providers in your area willing to come into your home and I sincerely recommend an attempt to find one.