I don’t want them to be labeled….

If you’re reading this, than you’ve probably wrestled with this question. You have a strong feeling that your child, or yourself, have something more going on; whether it’s being on the autism spectrum, sensory or learning disorders, ADD/ADHD, or physical/genetic issues, this is a question that often comes up.

You wonder –
Does my child/do I need a formal diagnosis?
Will my child/I be “labeled”?
Do I need to tell their/my school?
Will telling them they have ______ make them feel bad about themselves?
Is it going to make any difference in our lives?

From all of the conversations I’ve had in the last 6 years, adults I’ve spoken with who have different challenges, experts I’ve read up from and engaged with, and our own personal experience, I’ve got to say it –

Get. The. Diagnosis.
There are so many reasons that it is better to do it, than to not, so I’m going to try and cover just a few big ones.

#1 – It helps them/you be and feel understood.
My husband didn’t learn he was on the spectrum until he was in his 30’s. When he did, every awkward, painful, and humiliating social and emotional memory from his life suddenly made sense. He understood why he could have perceived conversations one way, when they were really meant another; why his brutal honesty (which he considered a virtue), often alienated people; why he had occasionally missed out on advancement opportunities over other more “personable” candidates . It also helped him realize his own challenges and defaults, so he has become a much more actively engaged and aware husband and father.
Our oldest daughter, who is almost 14, wasn’t diagnosed until 11. We thought of her as “quirky” and being our first child, it didn’t occur to us that it was anything else. By 3rd grade it was clear there was something going on. Getting her formally diagnosed gave us an opportunity to sit down and explain that there wasn’t anything “wrong” with her
( something she’d heard at school from other kids ). We explained that her brain is literally different from other people’s. We helped her get a hold of some great books on being a kid on the spectrum. Now she uses the things she has learned as tools, and there is lots of open communication with us about when it’s an “Aspie thing” .

#2 – It helps them/you get support to succeed.
At some point, chances are you/your child will be going to school. There are a vast array of supports, helps, and services available – IF you have a diagnosis. If you do not, getting and ensuring that these things are in place is much more difficult. Whether you agree with it or not, the education department classifies Autism as a disability, which provides right and protections by law . Other “disabilities” such as ADD/ADHD, Sensory Processing Disorder, Dyslexia and more vary from state to state, but the point it this – having a diagnosis helps facilitate proper  instructional supports for success.
An often overlooked aspect of a formal diagnosis is the help YOU as the parent can receive. Having a child with challenges of any kind can be exhausting in a way that is difficult to convey. There are services available that allow your child to be with someone formally trained to care for them, so you can BREATHE for a while, and come back refreshed and recharged. Do not underestimate the need for this. The amount of burnout and emotional breakdowns, and even PTSD in parents of special needs kids is astronomical.

#3 – You/they will grow up.
Right now, you are able to advocate for your child, or maybe you have someone advocating for you. You are/have someone who understands the daily challenges of life; the physical tics, the emotional triggers, the food aversions, ALL the intricacies of being/caring for someone with a special need.
But someday, you/your advocate won’t be around.  Each and every special needs child/person is unique. If anything unexpected happens and someone else has to care for your child, or you suddenly find yourself having to do things on your own – the best thing you can possibly have is a doctor’s diagnosis, with lots of documentation. This gives a caretaker something in clear, defined language for them to refer to, and can hopefully help make these changes smoother and less traumatic.
Another important thing for someone entering into adult life with a diagnosis, is the ability to apply for financial support if it is needed. It can be a struggle to transition into independent adult life for someone with special needs. Add anxiety or sensory issues on top of that, and getting or keeping a job can be difficult. That is when things like disability, medicaid, and other available services can literally become lifesavers.

One last thing to consider – every adult that I’ve talked to, whether they have Aspergers, ADHD, or whatever else, has been relieved at finally having answers and a place to start with better understanding themselves. It offers insight and often forgiveness of themselves for not doing or being “better”. It has let them love and accept themselves, and move forward. It is by being open with our differences when needed , that we can break the stereotypes the world has of those with special needs, and we and our children can flourish. So be brave, seek the answers you need, and be the advocate for yourself and your loved one.

With love –
Sarah

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