One of the topics
that seems to come up regularly when talking with parents and caregivers of
Autistic kids (or likely Autistic) is a disapproval of labels.
"Oh, we don't believe in labels," they exclaim. I understand. No one
wants to envision their child being held back or inhibited from leading a
wonderful and full life. And some fear the unfortunate and incorrect negative
stigmas associated with Autism.
To rehash my story
from my last post, I was not diagnosed until age 33. I lived my whole life
thinking I was "normal" (despite all the tests, and doctors, and
never fitting in, or having a single friend until high school, the anxiety, the
depression, etc.), but there were no answers that described me back then. In my
mind, therefore everyone else must be dealing with what I was dealing with and
I was a failure because I couldn't cope, because I didn't fit in. I lived 33
years of my life feeling like an utter failure. Sure, I could talk and drive,
but inside I felt I was very broken. I spent many years depressed and at times
passively suicidal. I didn't have many friends. I was fired from jobs I was
able to get (the topic of another post). Being misunderstood (and sometimes
humiliated) for so much of my life wreaked havoc on my self-esteem. I was
devastated by disapproval.
changed my life. To call it profoundly transformational would be a gross
understatement. Finally I had answers for all of my struggles and I could start
working on mitigating and finding coping strategies. I started learning about
who I am, learning self-awareness, and self-kindness. But equally as important,
I could start to understand my strengths and gifts and talents. I had never
felt good at anything in my whole life. I really strained to see what value I
provided to the world, and the bad usually overshadowed the good. But with my
new knowledge, I started to see myself in a whole new light. Acceptance and
self-awareness is the first key to providing a better life for Autistics, and
that awareness opens the door to tools to manage, among other things, the
intense feelings that come up when overloaded by the outside world. And the
knowledge can help you better help them discover their strengths and gifts and
talents and how to pursue them.
It is also worth
noting that it is estimated that upwards of 50% or more Autistic children elope (wander off). Even more scary, it is estimated that over 90% of
Autistic child deaths are due to drowning after eloping. Autistic kids
don't have the same cognitive understanding of danger and their own welfare.
They can also have low muscle tone, low coordination skills, and lack of muscle
control. And yes, while not a primary indicator, decreased understanding of
social norms can cause isolation, and quite frequently bullying. Knowing this
type of information can help keep your kids safer, healthier, and happier.
A label will also
help you better understand your child's behavior. Autism is not a psychological
problem, it is a neurological difference. When Autistic people melt
down, we're not giving you a hard time, we're having a hard time. By having
awareness of this critical concept (along with many others) you can have more
compassion for their struggles and help them through their struggles more
But the best part
is, you don't have to tell anyone! You can use the new knowledge and
information to improve the life of your Autistic loved one, and no one has to
know. Granted, the more people who know, the better support your child can
receive, but if you are worried that a label of Autism is going to more
negatively impact their life than not knowing, don't tell anyone.
By not getting a
"label" for fear of negative outcomes, you are choosing to hide who
your child is and ultimately by doing so creating those same negative outcomes.
By seeking answers you can bring relief and healing, and, in some instances I have
seen, even across multiple generations.