Disclaimer: For those of you who are used to my edublogging, this is a brief respite. Every so often, I need to blog about myself as a person, without my “teacher hat” on. If you don’t care to continue, I won’t begrudge you that.
Ever since my elder son’s diagnosis in November of last year – almost a year now, which is unfathomable to me – the subject of autism has been on my mind frequently. Okay, it’s probably been on my mind longer than that, since the diagnosis was no real surprise to us: all the stereotypies were there, as well as the developmental delays. I had done a fair amount of research on autism and its symptoms, having done a presentation on the subject in college for my special education course, and the speech therapist working with him had talked to us about it, since she had worked with several children on the spectrum. Since the diagnosis, I have tried to stay apprised of happenings in the autism community, most specifically the crazy antivaccinationists that use autism as a vehicle for their crazy conspiracies about “Big Pharma” and the evils of vaccines (like those dreaded “toxins”). In my time on the Internet, I’ve run into more than a few people who have made wild claims, and I keep up with them so that I can be prepared to counter them when I encounter them, just like I do my research on crazy ideas like FEMA death camps. (That’s not a joke, either; I had a student seriously ask me about these, his only evidence proffered being a YouTube video.)
But autism for me is a bigger issue than nutjobs like this. It is something that I live with daily, and not just in my son.
Let me back up for a moment: Part of what prompted this is new evidence that the prevalence of autism has increased to about 1%. (See here for some comments regarding the reason for this.) It made me think about something that I’ve never really talked about with anyone outside a small group of family.
See, when we got the diagnosis and even before it was official, I kept thinking about the genetic component of autism. Really, what I was doing is (from my observation) what many parents of autistic children do: they try to find answers. For some, it’s the idea of some environmental trigger, but for me, it was more personal, that maybe I have some role in it. (Yes, it’s irrational. I can’t really help that.)
So I started to reflect back on how my life has been like. I thought about my introversion and sometimes detachment from society. I thought about my frequent inability to pick up on social cues throughout my life, resulting in the appearance of naiveté (well, maybe more than the appearance) and social rejection. I thought about my strange sensory experiences, experiences so strange that I have a hard time describing them because there just aren’t words sufficient to convey the meaning. I thought about my borderline obsession with patterns and order, even little things like walking with my head down on a sidewalk so that I could measure my strides by the cracks.
And then the conversations started happening, especially with my parents. “You lined things up when you were little,” my mother tells me. “You used to flap your hands like that,” my father adds. And suddenly things start to make sense.
Now I have to be careful to note here that I am not self-diagnosing myself – I fully realize the danger in making this move, in convincing myself that I’m on the spectrum as well (although certainly I would be considered high-functioning, I believe). But I see in myself and even some of my relatives the very sorts of signs that lead me to believe that ASD might run in my family. And it would be an answer – maybe an unsatisfactory one, but still an answer. And that seems like better than nothing.
But even this realization of sorts has been bittersweet: now I find myself wishing that there was a good way to diagnose adult ASD. As of right now, I haven’t found any evidence to that effect. And certainly a diagnosis would serve no real practical purpose, since I really don’t require any special accommodations for any ASD-like traits; it would only provide me a little piece of mind and maybe a point of reference. It also might help explain why there are concerns now with my younger son about the same sorts of characteristics, and it would definitely help bolster a family connection.
By far, the most frustrating thing for me is the desire for answers where none are to be found. But like many things in life, I have to learn to deal with situations that are not ideal and be satisfied with not knowing for the time being. And certainly, I have to keep in mind that a diagnosis for me wouldn’t change anything about who I am, nor would it change who my boys are.
If we’re all part of that 1%, then so be it, but life will still go on, whether we know or not.
October 19, 2009 at 1:26 pm
Mr. B
Thanks for sharing your experiences and struggles with your son’s ASD. As others have said I will say too, “don’t blame yourself”. I think that everyone at some point in their childhood had a strange obsessive quirk or odd compulsion they would engage in, therefore your childhood quirks may just have been normal development and not anything related to ASD. Good luck on your quest for knowledge and answers.
-Luke
October 19, 2009 at 1:28 pm
Mr. B,
Reading this was insightful and interesting. I have heard of all the abnormal theories for the cause of autism and I have had a similar reaction as you when I have heard these things. Although, I have never given thought to the idea of it being genetic, because when you look at most parents with autistic children, you do not tend to see autistic traits in the parent, then again we do not take the time to study the parent or know them well enough to notice commonalities. I admire your quest for answers, and I am sure that if I was a parent of a child with disabilities, or in the future I am a parent with a child with disabilities I will be a strong advocate and researcher as well because who wouldn’t want to know why, how, or what causes it. Look to the Lord for answers and direction and he will be sure to lead you, maybe not directly but he has his ways so patience and faith is key. Good luck with your research, I hope God is good and continues to bless you and your son.
October 19, 2009 at 6:57 pm
Mr. B,
Thank you for sharing your thoughts with us. I can understand why you desire to find answers for your son’s diagnosis, as I am also extremely curious about what actually causes autism, and I don’t have that personal connection that you have. A lot of the general population have traits, however small, that could label them “on the spectrum”, just as you were saying about yourself. I do wonder if autism has actually increased, or we are just labeling more people as autistic the more we learn about it! I believe this could be beneficial, because then we can help individuals with autism who may struggle succeed because we can understand, to an extent, the ways in which those individuals with autism best learn. All that to say, I wouldn’t look at a diagnosis as negative, because it opens up so many opportunities to teach learning in new ways that might make more sense to that child!
I hope you continue to find answers and to be content with whatever you find out. Most importantly I hope you remember that that causes for your son’s autism really don’t matter, it’s just what you can do for him now, and I’m pretty sure you’re giving him exactly what he needs!
God bless!
October 19, 2009 at 7:53 pm
Mr. B,
Thank you for sharing your feelings on Autism. Autism is something that I have grown up thinking about. Although I am very close to a boy with Autism, I never thought it could be genetic. It does make sense to me that it could be genetic.
I believe you had the same reaction as many parents who find this out about their children. They want to know why it is happening to them and if it was something they have done to cause the problem. I think that although in some cases it could be genetic, you need to know that that is not the case in all spectrums of Autism. Going on to the idea that more people are diagnosed with Autism now then ever before could also answer some questions. If when a parent was growing up with these symptoms, they may not have been diagnosed. This does not mean that the parent did not have it, it just means that it went undiagnosed.
Thank you for sharing with us. I hope that you can continue to get answers for your children, and for yourself.
God Bless!
October 19, 2009 at 7:56 pm
Dear Mr. B,
Thank you for sharing your thoughts about your sons ASD. I can understand your questioning if you have played a role in your sons disorder. It is normal to want to find answers. I think this is common among parents with children that have any disorder. However, I believe that this is the wrong way to look at. When a child has a disorder, it doesn’t matter how they got it, but rather how it can be taken care of and kept under control. It sounds like you are doing a good job of this as well.
I’m am sure that it is hard to get off your mind that you might play a role in it, however, because you see many of the same traits in your son as you had. I can definitely understand how frustrating it might be, wondering if you have ASD. As you mentioned in your post, it would “provide a little piece of mind.” It is somewhat like when you go to the doctor for some sort of pain or problem and hope that he can diagnose you with something, anything, just to let you know that you aren’t crazy and feeling some random pain for no reason. But just as you also mentioned, you have learned to “deal with situations that are not ideal.” Since you have similar traits to your son I am sure this will be something that he will be able to keep under control as well. It seems that you have gotten along fine in life, seeing as you’re a teacher, so I can imagine that your son will also be successful.
October 19, 2009 at 9:46 pm
Dear, Mr. B,
After reading your article I feel I can understand, where a parent might be coming from when caring for a child with autism or working through the process of trying to figure out what might be going on with their child. As a future teacher I feel that the parents view of whats going on with their child, and how to work through that, is important when working with their children.
I hope that whatever the outcome for your two sons is, they always bring your joy. I know the road will be tough for you, but God has blessed you. Thank you for sharing your story with us.
October 19, 2009 at 10:01 pm
Dear Mr. B,
Wow, I bet most people don’t even consider themselves as a genetic holder to pass down such disabilities as autism. I think your right if you never find out if it’s genetic because you’ve been very successful thus far and it doesn’t change the person you are. I have a thirty year old cousin who has a severe case of autism, and I know my aunt sometimes feels bad about it. Nevertheless, she never loved her any less. I wish you and family many blessings and continue with your post, they are very informative.
-Mellody
October 19, 2009 at 10:24 pm
Dear Mr. B,
Thank you for sharing your thoughts on Autism. I personally do not believe that it caused by vaccinations but others would argue with me until they were blue in the face. However, I do believe that ASD can be caused by genetics especially if one of the parents has it but I do not think that your similar characteristics of ASD caused your son’s autism. Also, I really hope that your younger son does not have ASD and instead just shares your childhood traits and behaviors. I wish you and your family the best.
October 26, 2009 at 6:11 pm
Dear Mr. B,
Thank you for sharing. I know it is difficult not alwas gettin the answere that you need when you need them. I always knew Autism could be genetic, but I do know some kids who have Autism and noone else in their family has it. It is not always as bad as it may seem. No matter what the circumstance, no matter what the disability; nothing is more impoortant than just loving them and making each day a happy day for them and for you. From what I can tell, you have alot of love for your family and that is what makes you rich. Good luck with everything!