That word encompasses so much more than you can possibly imagine. While I understand that the diagnosis is absolutely critical in order to receive the assistance and therapy your child needs, it still does not truly describe your child and the diagnosis can leave you feeling more than defeated.
For me that included disbelief, anger and maybe some denial.
In reference to those who have been diagnosed with Autism, they are usually described as being “under the umbrella of ‘Autism’” or being “on the spectrum”. I know you have probably heard this a million times but have you really thought about what that actually means? What does “On the SPECTRUM” mean?
- a band of colors, as seen in a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength.
- used to classify something, or suggest that it can be classified, in terms of its position on a scale between two extreme or opposite points.
- “the left or the right of the political spectrum”
- a wide range.
In other words, there are literally thousands and thousands of degrees of Autism. This is why you will also hear that “no two children with Autism are alike”, because they most definitely are not alike. Even when they may be equal in degree of severity, they are still so, so different. For this reason, a therapy that may work for one child will not necessarily work for another. What brings comfort and joy to one child may cause distress in another. What stimming looks like in one child will look completely different in another. You get the idea.
The best way I have found to explain it is this way. Saying a child is autistic is using just as broad of a stroke as describing a child as athletic.
I’m sure you have probably referred to someone as being athletic, but what exactly do you mean by that? Athletic how? Are they strong like a power lifter or are they fast and tough like a football player? Are they powerful and graceful like a gymnast or are they calm and precise like a golfer? Do they know how to swing a bat to hit a home run or do they have the endurance of a marathon runner? All of these are examples of athletes and the comparisons could go on and on. Just because someone is athletic does not mean that they are great at all things sports. What I am about to say, I say with love. I love Charles Barkley. Sir Charles is one of the best basketball players I know but have you ever seen him swing a golf club? If you haven’t, trust me it isn’t pretty.
If you are reading this as someone whose child or loved one has recently been diagnosed with Autism and you are wanting to learn more about what that means for you and for them, what I want you to know is that the label “Autism” is not a description of what they can and cannot do. Dr. Stephen Shore summed it up perfectly when he said “If you’ve met one person with autism, you’ve met one person with autism”.
“If you’ve met one person with autism, you’ve met one person with autism.”
Taylor was two and a half when he was diagnosed as having Autism. In fact, we were told by this doctor that he would be considered severe and may one day have to be placed in a home.
No. I did not accept that. I would not.
Why? Because it didn’t feel right. I knew my child better than this doctor and I felt that she was giving us a blanket prognosis after only spending a total of thirty minutes with Taylor. It certainly didn’t reflect who my child was. Her description of him in the report was so off. I felt like I was reading about someone else’s child.
This was also my first real glimpse into how different people with Autism are from one another. At the time of his diagnosis, “Rain Man” was the only reference my husband and I had as to what Autism was and we both knew that Taylor was nothing like “Rain Man”. So the doctor must be completely wrong, right? Well, she was wrong, but not completely. Taylor was not severe. Taylor did not and does not ever need to be placed in a home. The only thing she was right about was that Taylor was Autistic but she was grossly wrong on the degree.
What that doctor did give us was a place to start. Mike and I had our suspicions that something wasn’t right for some time. Hearing the word “AUTISM” gave us a direction to follow, gave ME something to attack. We would let Taylor show us what he was capable of. As much as my heart broke to have him officially diagnosed with Autism, that diagnosis was what we needed to get him into speech therapy and occupational therapy. That diagnosis helped him get the IEP he needed when he started school and receive the assistance he needed throughout his school years.
My point is this. Don’t let one doctor or one diagnosis determine what you should do for your child. You need to follow your gut and your heart and let your child show you what they are capable of.
As a parent of a child with Autism, you may think it will be hard to find someone that really understands what you are going through. Honestly, it may be at first. At least it was for me. I had no one other than my husband that truly knew what I was going through with Taylor each day. No one else I knew at the time of his diagnosis had children on the spectrum. It would be years before I would meet another mom that really “got it”.
When I finally did meet other Autism moms I discovered that our challenges were still very different because our children were completely different.
Here’s the good news. It didn’t matter to us because what we found was someone that FINALLY understood a little bit about our daily lives. In each other we found an empathetic ear, not someone who just gave us unsolicited advice about how that meltdown was just a temper tantrum and how our kids just needed good discipline…blah, blah, blah. I found other moms out there who truly understood why I couldn’t take Taylor to the bank with me because he would run out into the parking lot the second I looked down to write a deposit slip. Likewise, they found in me someone who understood why they couldn’t take their child to birthday parties because the stimulation may cause meltdown. These may be little things but it’s the little things that are so important!
My good friend, Dana, has a young daughter that also has Autism. Her daughter is more severe than Taylor is. She is a young teenager who is non-verbal and needs a lot of assistance from Dana and her husband. Give her daughter a tablet though and she will let you know what is on her mind.
Our children are vastly different in degree but Dana and I are still able to support each other. I know that I could never fully understand how hard her days are because my life with Taylor is so much different…and I never pretend to. On the other hand, she knows that there are also things that I go through with Taylor that are extremely hard BECAUSE he is high functioning. Our challenges vary in degree but we both have them. We don’t try to one up each other or see who’s day has been the hardest. What we do instead is find opportunities to laugh together, workout together and share our latest stories of life with our kids. Dana has been huge in giving me ideas on things I can do that could help Taylor meet some of his goals. Hopefully I have helped her some as well, even if it’s just sharing funny stories.
Dana has shown me how to find the joy in everything, even when everything seems to be falling apart. She has taught me that sometimes the best thing you can do is just laugh. Although our children are on complete opposite sides of the spectrum, we still have that common ground. That diagnosis. Autism.
I know it can be scary when you first hear “Autism” in reference to your child and for reasons I have just written I cannot tell you what your future holds. That is your story to be written by you and your child.
What I can tell you is that it will be an exciting and adventurous journey. It will be full of every single emotion you can think of. You will have those low, low days and you will have the highest of highs. At times it will test your marriage but lean on each other and your marriage will be stronger for it. There will be times where you will hit your wits end and then there will be days where you can’t contain your happiness. That’s what makes it a journey. The people that are brought into your life because of that one word, “Autism” will be immeasurable, invaluable.
There are hundreds of us Autism parents out here that get it. We know. We understand. You are not in this alone.