First of all, Autism is a spectrum condition. I think they technically call it a disorder but I do not like using that word due to the negative connotation attached to it. That’s the problem with labels, they tend to become something else they were not designed for. Take for instance the A-type, B-type personality thing. Its original design was to determine stress on a person’s heart. It was actually not a good thing to be A-type personality as it suggested a higher chance of heart problems. But over time people have used this label to define someone’s personal preferences or perhaps even work ethic. I don’t believe that labels are the problem though. They are created to help the helping professions, not necessarily to define a person, but that’s what you end up getting with the label of autism.
So what is autism? In basics, it is a label given to those who have a difficulty in 3 specific areas. Social interaction, repetitive behavior and (speech and nonverbal) communication – that’s how it’s on a spectrum. Leaving a million plus combinations of autism. There must typically be a problem in all three of those areas to be considered autism.
Over the years, some autism definitions and ideas have changed. When my son was diagnosed it was simply autistic. Over time, his therapists assured me they believed him to be of higher functioning, as opposed to low functioning. This related more to his ability to handle his world, not his IQ level. (In fact, he has tested average IQ.) Over the years people have taken High functioning to mean extremely intelligent. I myself use the label high functioning Autistic to describe my son, however, due to misunderstandings, I don’t always find it to be the best label for him.
There has also been a lot of misunderstanding of Asperger’s. Most people I’ve run into, who don’t have an autistic child, will commonly misunderstand the difference between Autistic and Asperger. Quite recently, the Asperger subtype of autism has gone back to being lumped in with a more simplistic label of Autism. It has always been understood that Asperger children were on the Autism spectrum, but it may have been the misuse of labels that left them placing these children back into the one label- that’s my speculation.
Some people seem to think that Asperger means -not as severe or perhaps not as severe and also super smart. That’s not what Asperger’s is. So I’ll explain. The difference in labeling a child autistic vs Asperger was speech delay. That’s the gist of it. (Aspergers can have average or high IQ) Autistic labeled kids had speech delay as they grew and developed. Asperger kids did not. They spoke at a seemingly normal rate as they grew and developed in their early years. This, however, doesn’t make them less autistic they are just part of the spectrum of different combinations of autistic. (they still have some type of problem in communication – such as nonverbal) But for the helping profession, the label could help them know better where to help.
Around the time my child was diagnosed, I think the rate of diagnosis was 1 in 850 kids. (it might have been 1 in 1000+) I have watched over the years as that number has changed to its current rate of 1 in 59 kids. There was a time that autism was only given for extremely severe autistic kids. And so, when most people think of autism they imagined someone like Rain Man, or that one autistic relative far removed who still had to live with his parents at age 40. This idea of autism has left many people seeing autism as an extremely bad thing, they are seen as someone who is incapable of fully functioning in life. However, there are many autistic labeled people out there who are married, have grown up and you would never know they were labeled autistic. All because the autism label is placed on someone who has some level of difficulty in 3 areas of life. What are your own three areas you struggle in and maybe we can give you a label. So that the world can immediately assume that you are not worth dealing with. Or maybe less than, or possibly should have never been born.
When my son was first diagnosed, me and my husband were afraid of that label. We didn’t want anyone to know, so we never told anyone. It was over the years that I fully started to understand what autism was and what it was NOT, that I’ve realized maybe people should see and understand. My son is a walking testament to early intervention and getting over the stigma of autism. Don’t get me wrong though. 1 in 59 kids is a sign of a huge problem, one that we should absolutely be trying to solve, but to allow the idea that a child with Autism might be considered less than because of their difficulties on us- as parents and adults- is ridiculous.
The label is given to help the child, it is not meant to hurt the child like the stigma that society places upon them. In fact, one of the greatest outcomes of diagnosis is Early Intervention. Therapists are able to diagnose a child as early as age 2. The sooner a child receives therapy, the greater chance they have of developing methods to help the specific child understand their world. For me, therapy helped me better understand my son. He didn’t always work the same way as any of my other kids. He was, as the Autism logo represents, a Puzzle. The connections in his mind are like nothing I could ever seem to guess. So, you have to unlock your child, figure out how they think and then try to remap their roadmap. It’s much like rewiring their brain, but you can’t open their head and rewire it, you have to do it through intervention. It’s like trying to rewire the hardware of a computer, but the only tool you have is the software currently on the computer. This is best done while the child is young before the roadmaps of understanding their world isn’t set in stone.
I don’t want people to think that autism is easy. (for the parent nor the child) It’s extremely difficult. Especially for moms of severely autistic kids. I couldn’t imagine those hurdles. I will tell you that early intervention has been one of my greatest helps, but my son will always have some differences. That doesn’t make him less than, just makes him different than me. Something the world says is a good thing (being different than everyone else) unless it is “different” from them. What the world says is “if it places any form of “extra burden” on me, then being different is not worth the hassle.”
As a mom of five, I can tell you with some level of certainty, that all kids are difficult in different areas. That is the harsh reality of becoming a parent. Autistic kids will have their own hurdles and difficulties but so does every child. Even high IQ – genius kids have areas they struggle in and areas of parenting that are difficult. But, Parenting is not about wishing for a different kid or a different situation, it’s about taking care of the ones God gave you and knowing that even the hard ones are so incredibly worth it. I don’t know of any other career on this planet that you can say -all of the late nights, the things you gave up, and the tears of frustration were worth it other than that of being a parent. And if you don’t believe that is true, then you are not doing it right.
I am not an expert on autism. I am a parent with a child on the Autism Spectrum. Every experience has its own uniqueness. But I believe full heartedly as a Christian, the burden of what the world has given me is not a reason to wish it all away. Children in all forms are a blessing, but not all blessings are easy. Some can be excruciating, difficult, or not what we want. But if you want to see those hard things as the blessing they are called by God, then you have to change the way you see them. That starts by understanding better who God is and why He would call children a blessing.