In the beginning, I had no idea what autism was only that it was fused with negativity and was so enigmatic. Things started to come together for me when I read “The Complete Guide to Asperger’s Syndrome” by Tony Attwood. However, it was not clear enough for me to understand the differences that Daniel had from an Aspergers diagnosis. He did not fit the criteria for Aspergers, though different doctors would disagree. He was social at times – when we went into the doctor’s office he just looked like a very busy “I have things to investigate” type of kid. If the doctor talked to him he would look at him, he would smile, but not for long and he did not talk.
Mystery?? Not really, now that I understand a bit more about autism.
Through the years, I have gained better understanding I still find it challenging to explain to a person. If you put autism into a search engine you can get all sorts of information – if you do it without any knowledge or you have a preconceived idea it can be riddled with even more confusion. What is autism? I am not going to go into defining autism. Other people have written some great posts and I will share a few at the end of this. However, for me when I understood that autism is considered a “social disability” I was able to separate my different challenges – I was able to see how others, including myself had blamed all symptoms or behaviors on autism when in fact it may or may not be a contributing factor.
There can be many other challenges that impact the quality of life for an Autistic individual.
For instance, Daniel is Autistic with sensory processing disorder, auditory processing disorders, language/speech delay, which could be broken down into specifics, one being Apraxia. He has generalized anxiety disorder, gastrointestinal problems, and sleep problems too. Are these caused by autism? I do not believe so since, each one of these a person can have individually without autism. All of these issues run within my family on both sides not everyone in my family is Autistic. There may be a genetic cause responsible for all of these conditions, like a “cluster effect” however; when we speak of autism it is a specific social disorder.
Breaking down each diagnostic component and analyzing it helped me to understand that I could not “blame” autism.
I sought out the differences between disease, neurological disorder, and syndrome by doing so it helped me understand even more. The more information I read the more I understood that there are other contributing factors to the complexities of an Autistic individual. Each individual carries their own vast or limited diagnosis along with their autism diagnosis. Not only that, but the person’s individuality – their personality – played into their behaviors and their responses to situations/environments. There seems to be a “grouping” so to speak when it comes to autism. The overall perception is that autism represents limited qualities, those limited qualities strip individualism and personality.
Autism simply and generalized defined is a “social disorder.”
(This is revised) I do not believe that it is that simple, however; for the sake of keeping this post as focused as possible I have limited myself to generalizing. I will share this though, “When people refer to “Autism” today, they are usually talking about Autism Spectrum Disorders (ASD), which are five complex, brain-based disorders that affect a person’s behavior as well as social and communication skills.” – The Autism Science Foundation I use that because out of all of my searches in hoping to find an easy way to say what autism is, every one used different language. Several of the links I share below are much more informative. For me, I found it very confusing that so many people were blaming autism for other symptoms. I found it confusing too that people got so upset at,
- The need for routine – Practically, every child does better with routine and many adults do too.
- Difficulty with change – Many people have difficulty with change we all need some sort of adjustment time, and here is the question I would like to ask, “Why do people think that it is perfectly fine to change routines, schedules, life in general without communicating the change to children? People act like nothing phases children or that they should be fully capable to “go with flow” with whatever the adult wants or needs to do.
- Inflexibility and repetitive behaviors – When your world does not make sense these things help bring constant comfort. Being inflexible, in my case and what I have observed with my kids comes from lack of understanding and needing to feel in control. It is not a manipulative control it is a control to help ease confusion and chaos in the mind.
Early on when I was trying to find answers, there were implications that the Autistic child/adult were purposely doing these things. The elusive language filtering in the perception that Autistics do these things to “get their own way.” Those indirect, at times, very direct implications that autism was the cause of everyone’s frustrations continued to fuel this big invisible dark mass that lurked and lingered. Autism could be blamed for the slightest behavioral issue, the demise of marriages, even to the extremes of mass murder. It is an easy word to latch onto and blame. Have the symptoms I listed above been disruptive and difficult in our household?
Yes, but anxiety and sensory issues have too.
I cannot say this is true for every Autistic, but when I realized many people, many “normal” people have very similar issues then, my disconnected feeling from humanity was lessened a little bit. Another component is learning challenges, currently known as learning disabilities. For instance, I have read from parents and spoken to several who have blamed autism when it is ADHD/ADD symptoms. Though autism and ADHD/ADD tend to run closely together with many people who are Autistic not everyone who is Autistic is ADHD/ADD and not everyone who is ADHD/ADD is Autistic. As I understood that there were co-occurring symptoms and co-morbidity lumped together into the societal perspectives of autism, I was able to understand what autism was in our household.
This helped me to have more sympathy and understanding toward families whose struggles were not the same as ours.
Autism was not just a big lump of confusion. Autism was no longer an IT, autism became an individual. Autism was no longer a huge monstrous thing to be frightened of autism became individuals with very specific challenges and uniqueness. Autism was now personalities, many faces, bodies, thoughts, colorful, hopeful, so diverse, yet sharing many of the same challenges. However, the challenges could be expressed, manifest, dealt with in vastly different ways due to our other co-morbid conditions. Our environment could determine how we respond. Our upbringing could manifest very different behaviors in how we respond. Our inability to communicate could cause additional reactions.
In a way, I saw it like this -
Autism along with many other factors could influence or increase/decrease symptoms of autism.
This gave me a clearer understanding, I was able to see Daniel, later myself as a whole because I was able to see autism as being a part of us and I had names for each one of our challenges. For me, when I broke each component down I could see the whole and how each one affected the whole. In the beginning, I saw autism as something that we could defeat; I did not see it as part of who we are – it was disassociated. I believe that perception came from the lack of credible information that was out there at the time. I had adopted the mindset of demonizing autism because of my lack of knowledge. It was a hard day to realize by doing so I was dehumanizing my son and I was blaming myself. Now we have tons of information to help guide parents and individuals into receiving and accepting an autism diagnosis with a more positive mindset.
When I say “positive” I am not saying that everyone should be excited and embrace the diagnosis without any negative emotions.
In part, it is difficult to accept at first because of the way autism has been portrayed in society. The way that it is broached with parents or the person can influence their perspective of the diagnosis. However, any diagnosis takes time to process. I do not think that parents should not be allowed to express their concerns, fears, and yes, even disappointment, but I also, believe that they need to move forward and seek positive ways to gain support for themselves and their child. I feel the same for those adults who are receiving their diagnosis. I had to go through a process of acceptance – it was hard at times, it still is, but discovering each condition and how it affects me has led me to a place of healing. As I have gained more knowledge it has helped me to understand each of my children better and has made me more empathetic to people in general.
When I decided that I was going stop trying to make Daniel “normal” and try to understand the mystery of autism, I saw my son.
I saw all the parts that made him the beautiful marvelous neurodiverse little guy that he is – I saw the beautiful minds of my other kids, in David, and myself. Autism was no longer something to blame; it was now an answer that opened the doors to multiple understandings and a new appreciation for each individual that crosses my path in this lifetime. Autism is a word, a diagnosis, a useful guide into helping gain support, it is different for each person, and I acknowledge that for some the symptoms are incredibly difficult, but it is not a sword of evil to wield at the world to be blamed for all the woes that pains us.
Autism cannot be blamed for everything.
Some other reads.
- I found this Autism FAQ, by AUTISTIC HOYA to be a great resource in learning information about autism.
- Sparrow Rose Jones has written some amazing posts (a book too that I recommend!) and I would love to share all of them, but I will only link to one for starters. Autism and the DSM-5: Diagnostic Criteria (Section A)
- What is Neurodiversity? by John Elder Robison
- What is Neurodiversity?
- Autism Symptoms Not Explained by Impaired Attention
- I found some of the language, and the hint of negativity in regards to autism concerning, but I think that the information about hyperlexia is good information to read. Oops! When “Autism” Isn’t Autistic Disorder: Hyperlexia and Einstein Syndrome