awesometism

exploring the awesome in autism

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On: Diagnosis and Labels

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.

The diagnosis 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 effectively.

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.

On: Autism and Recovery

There was a thread on a Facebook group tonight with a parent touting that their child had been cured of Autism. As you might imagine, it quickly disintegrated into the Autism Wars - parents who ultimately want the best for their kids, and Autistics who have seen how “the best” can sometimes be “the worst”. Unfortunately, there are many people without a proper understanding of Autism who grasp on to cures and remedies and recoveries that can be more harmful than good because they are attempting to fix symptoms, not the underlying differences.

 

The problem is Autism isn't malaria or a cancer you recover from. If you are only looking at Autism from what you can see, you are missing the 95% going on below the surface. Autism is a neurological difference, a different wiring of the brain. For me, sure, I can cope and "appear normal", but I see the world differently, I feel the world differently, I interact with the world differently. I can make eye contact, but it is easier to stare at the floor and have a conversation with you. I can also drive a car and run a business and have beautiful relationships. Most people never think I'm Autistic. If my Mom - a highly educated medical professional - didn't know better she would think I'm cured too. But you wouldn't last 20 seconds inside my head. Some days I don't even last 20 seconds inside my own head. We could talk on and on about delayed maturity, low frustration tolerance, overactive fight-or-flight, sensory overload, Autistic depression, communication, cognitive distortions, prosopagnosia, proprioception, alexithymia, apraxia, misophonia, and so on, but that is perhaps for another post or twenty.

 

That said, I also want to acknowledge that it can be incredibly difficult being the parent of an Autistic kid. I know. There are days you wonder if you will survive, if they will be able to take care of themselves as adults, what their future will look like. Will they graduate high school? Be able to be independent? There's fear and anxiety and worry and doubt. Did you do enough? The right things? And to top it off, there is a serious lack of information and resources, and most that do exist are wrong (the topic of another post) or far too expensive. So when someone brings hope of a brighter future for them, absolutely we want that.


I am also Autistic myself, and 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, everyone else must've be dealing with what I was dealing with, and therefore 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 knew I was very broken. I spent many years depressed and passively suicidal. All of the "don't do this", "do that" surely helped me interact with the world better, but it didn't do anything for my inner world that knew all too well that I was different. In fact, it made it worse. I was more of a failure. More of a screw-up. Getting my diagnosis and learning about who I am, learning self-awareness, self-kindness, and coping skills, that is what changed my life. Acceptance is the first key to providing a better life for Autistics.

 

Getting someone to the point where they're more societally acceptable is a great goal, and it will make life easier for them to be sure. I enjoy learning new techniques and skills. But that should not be the primary goal. Their happiness is, and that happiness first stems from self-awareness and self-acceptance and self-kindness. We cannot dismiss Autism as a disease to be maligned. Autistic people need support systems and coping strategies because Autism is for a lifetime, stiming or not.

 

In the end, we all want the same goal - parents, teachers, healthcare professionals, and Autistic individuals: a bright future and happiness. Our place in the world. Our chance to be successful.

That said, if you have found a way to miraculously rewire entire brain neurobiology, I will personally hand you your Nobel Prize.