Daniel asked me “What is Autism?” about two weeks ago. Ariel and Joshua have asked me several times on multiple occasions which is why I went in search of age appropriate books on the subject hoping that it would help – they did for about two seconds, but then after those seconds came floodgates of questions from each child. I wrote this post “Am I Autism?” back in June with the many resources that I gathered then trying to help my kids accept themselves and understand themselves. All three of them have a sense of not being like other children, while at the same time being completely unaware of their differences – it is our “normal.”
I tend to fall into this too even with all of my years of being acutely aware of how different I am I still have a certain unawareness.
I am not sure if others have this same experience or not. I did not really have an understanding of this until the last two weeks with all my observing, thought wrestling, pondering, researching, reading, and connecting other thoughts/self-awareness. I have a challenging time with explaining Autism to myself. My research is to help my kids and myself try to understand our world better. It takes time to shift from thinking “there is something wrong with me” to discovering “There is nothing wrong with me at all.” However, it is a continual challenge for me when I read other blogs, books, and various types of resources where there is frustration, sadness, annoyance, or even anger at what their Autistic children/adults in their life are doing …
I do it too! (and so do my kids)
It is a shock to my self-esteem every time I read something from a parent that is a negative or even when they joke about their children’s behaviors. I no longer take it personally; I have had to separate my emotions to some extent. I really like reading different perspectives and I respect their unique point of view – I respect people and their differences period. I appreciate (understand (a situation) fully; recognize the full implications of.) their challenges and the pain that they go through. If I were offended I would simply stop reading them, but I am not for the most part. It still stings a little and causes me to feel badly about myself at times.
I have learned to quickly work through that, shake it off, and remind myself of who I am.
(I have stopped reading some in the past, but it was because they became hateful and rather aggressive – I cannot handle that type of writing.) I do empathize with some - I can place myself into their position and see how challenging it can be for them and understand that they need to release some of their frustrations. I get that. I do that in my own way with family and relationships. Even though I can understand, it still leaves me with lingering thoughts that something is wrong with me and my kids. I think that it hurts me the most in regards to my kids. I work so hard at trying to instill in them the self-esteem that was not built into me as child.
Then, I think about when they are old enough to surf the web and when they stumble upon one of those posts …
I wonder if they will feel what I feel – there is nothing wrong with me, BUT there is. I have the same feeling when reading many of the books that I have about Autism. I had not been able to pinpoint what was bothering me when I read the books or watched the videos. Some of them I have turned off or stopped reading all together – the reason? The language was negativity sugarcoated with a sweet shell of oxymoronism. Things were written in the context of “Those who are Autistic need to learn how to be like the rest of us, but their brains are wired differently.” For some reason, while reading those books my head would flash of Ayn Rand.
Ha, I am kidding. However, those thoughts have flashed through my mind at times. I am not an Ayn Rand enthusiast; I am an open-minded individual that likes to read A LOT! I do not even agree with her all of her philosophy, but she makes some pretty valid arguments at times. (I know she is dead – her books are still alive.) Her books have a common theme and as I read those other books I felt like someone was standing there demanding that I stop being me while, cloaked with a smile trying to convince me that this was right and everyone agrees that it is the right thing to do – to stop being me and stop my children from being them. My mind can go into extremes so I am not sure if my intensity is accurate. Though, my gut kept getting “wrong type” of feelings as I read certain words.
I found myself editing the words to my children or explaining what they were “trying” to say.
What if that was NOT what they were trying to say at all? It does not matter, what does matter is what I teach my children. I have been able to use some of these resources to help the kids and myself gain insight or understanding. I can pretty much pull knowledge or learn from anything. I know that they are pondering it as much as I am. I really have no good way of explaining Autism. Autism is in our DNA – it is who we are and (granted Daniel and I are the only ones “officially” diagnosed as of yet.) they need to feel good about themselves. I admit, there are challenges that I have that I wish my children did not have such as anxiety.
I know their struggle and I want so badly to make it go away, but I cannot.
I wish I could have the answers to help them with handwriting so that they are not in pain every time they have to write or give them exactly what they need when they get overwhelmed with frustration that their hand will not do what their mind is telling it to. I wish I could help with many of their other struggles that I too have had in my life. Yes, I wish they did not have to struggle with many things, but other children have their challenges too. My job is to give them better ways of coping, find tools and resources to help them learn ways to use their talents and challenges in ways that are more creative – help them find their own way to succeed. We can make up songs about anxiety! Dance to those anxiety song! Paint their spelling words, make a sentence out of pretzels – how cool are you if you can make a sentence out of pretzels?? (It can be done.) That’s what I am talking about.
Alright, back to the question “What is Autism?”
The truth is I still cannot give a clear simple answer. I find it completely full of wonder and intrigue every time I read something from another Autistic or a parent who has shared some great insight with helping their child succeed and help them to be proud of who they are. As I read from their perspectives, I find myself full of excitement and joy because of our similarities and differences. You know what else? I do the same thing when I read or meet someone who is not Autistic. I find humanity as a whole complicatedly delightful. I just downloaded all that to tell you this! I believe I have actually found a book that I feel good about. It seems to be written in a positive way that explains ASD in terms that are accepting and age appropriate for my children.
I have not read all of it, but I have found it to be a great resource to pick up and gain some insight or be able to share with others when I cannot find my words. I like that the authors share quotes and stories about and from other Autistics at various ages and stages of their life. I know, I know the title may rub some people the wrong way, along with the puzzle piece book cover, but what I have read I have yet to find it to steer in a negative direction. The language feels positive and its motivation seems to be that of helping ASD kids learn to appreciate and accept themselves. I cannot say that the language in the other books specifically for my kids age range gave such positivity. However, many of the books that are available are geared toward those who do not understand ASD not the actual person or children who are Autistic. MORE positive books to help others understand Autism is a whole other topic.
The book talks to parents in the introduction to explain the book and its purpose.
I found that interesting and I really thought it was great how they encouraged parents. They seemed to motivate into the direction of focusing on creating an atmosphere of building into ASD kids and using the book as a guide to help on their journey in life. Sigh … I sometimes I wish I would have had all of this stuff growing up. Alas, I did not, however, I do get the privilege of helping my kids. I am pleased to have found a useful resource like this one. Our Autism conversation will continue for the rest of our lives. It is casual and I only talk about it when they want to talk about it. Autism is “normal” to us – we are Autism every day so we really do not need to “talk” about it all the time. I find it interesting that all of this has come up in our household because recently, quite a few parents have been writing on the topic of talking to your kids about their diagnosis. I love it when that happens it kind of feels like we are all in sync or something.
I will share some related things that I have read or watched.
- Telling My Child About Autism
- Diagnosis: telling a child about their diagnosis
- When & how should you tell your child about his/her autism diagnosis?
- Parenthood: Telling Your Child about Asperger’s
- Internalizing What Others Believe