What a loaded term, so subjective and deceptive. There used to be a disorder called Asperger’s Syndrome. While many still refer to it and utilize it, it has been removed from the DSM-V at its publication. What is the DSM-V? However, it is most commonly referred to as the highest functioning level of Autism. What I think many people miss with this terminology is that the very nature of the phrase is misleading at best.
Autism itself is a very complex range of developmental delays and other behavioral, cognitive, emotional and educational issues/challenges that can be from the smallest of things to an all-encompassing lifetime of full-time care and commitment. (Even the smallest of things most certainly requires a lot of both time and commitment, I am specifically speaking of those children who are non-verbal and have physical limitations or other comorbid issues that preclude independent living, so for the informed, please bear with me).
There are many things that I missed along this journey, which has now spanned over two decades. I have two children under the Autism umbrella and both of them are so unique in their challenges that I still think that my learning will never be complete and will always evolve with them. So, the next time you hear someone say, “Oh, they have high-functioning Autism”, know that it is quite the loaded phrase.
I wanted to put together a list of unique things that I’ve discovered along the way and I hope that I’m not alone. Things that surprise me, moments that changed me and outlooks that drove change and progress to the forefront; there are many of these moments. There will always be time to add to this list, of that be sure! For someone who is just learning about Autism and what it means to enter this unique and challenging world, whether it be your child, a relative, friend, student or co-worker, know that it will be a journey, not a checklist. Here are a few of the thoughts that stand out the most to me:
- The rigidity of Autism is one of the most striking aspects of this challenge that I find exhausting and frustrating. There is an inflexibility that can strike with such force that no matter what you try to do to navigate around it, through it or with it, sometimes it is fixed and there is nothing to do but relent. In my son’s case, it revolved around food. For my daughter, it is social involvement. For both, it’s an inherent lack of interest in being involved at the family level that is often mistaken as laziness. (All of these I will be addressing in subsequent posts that elaborate and explore the topic).
- Learning disabilities took me by surprise. I had always “assumed” that they were their own issue completely separate from Autism. Oh how wrong I would be. Many individuals with Autism struggle from educational challenges and deficits that go hand in hand with the diagnosis. These issues are often called comorbid, or existing alongside/with another disorder. They don’t always have to be there and they can vary widely, but they are not “a part of the Autism” itself.
- Patience is a virtue. How many times have we heard/said this in our lifetime? Never will it be more applicable than when you are raising a child with Autism. Sometimes you will need the patience with them, other times with yourself. More often than not, you will need it with others. Family, teachers, therapists, friends and many people you haven’t even encountered yet will test you with judging you, giving advice, and sometimes even blaming you for your child’s behavior. You will need to draw from a strength that you don’t know you have yet, but it’s there. Give it time.
- Speaking of strength. You will need to be all the things that every parent already needs to be that we learn over time. You will also have to fight for every single milestone that your child accomplishes. You will go to war with school systems and school officials over how to best educate your child. Times will exist when you lose. This is where the aforementioned strength comes in. You will rise up and continue to fight. It’s worth it and in the end, even if you don’t get everything you want, you will have done all you can.
- The quirky things that I’ve gone through still perplex me. Things that, when you explain to others, will elicit some possibly strange looks! That time of year when the cartoon channel changes to its new line-up will test you like you never thought possible. It took two weeks before my son would even agree to be in the room and stop screaming because the times and shows changed from what he was used to. It happened twice a year, but he always reacted the same, no matter how much preparation I did. I contemplated recording weeks of shows in the original viewing order to prevent this. Oh, the things you’ll try to keep the peace!
- You will feel like giving up a million times. I’ve hidden in my bathroom with the door locked and a glass of wine in my hand sobbing. But you will come out. You always will.
- Children with Autism will surprise you with the things they CAN overcome. My son struggled with a complete lack of understanding of humor. After years of determination and practice, he can joke with the best of them. Perseverance is an understatement. You can accomplish a lot more than you think you can and don’t let anyone EVER tell you it’s impossible (even though you might think it is at the time).
- Autism may be something your child lives with, but it doesn’t define them. Sometimes I catch myself saying, “my Autistic son”, but he really is just my son and he deals with some challenges with Autism. Separation of the two was something that took me a long time to do, but when I finally did, I saw him for who HE is, not just the label.
I’m sure that I could think of a lot more things that stand out to me, but these are ones that really stand out and have been such a huge part of our journey. My daughter is just now starting the teen years, so I know I have a whole new crop of challenges ahead of me, which I will attack head on as I face them. Maybe the second time around I will be able to handle it a bit better, but then again, she is a teenager, so there are no guarantees!