UPDATE: This blog post was born out of frustration and pain of being misunderstood. We’ve since talked with the other blogger, and we now understand where each other is coming from. We are leaving the post the way it is, because this is not an uncommon response from people when they find out our son has Asperger’s.
Adam here. LONG post ahead. You know that feeling when you are reading someone’s blog or some article on the Internet and think “This person is dead wrong! I must correct them!” (relevant comic) But then you remember that it is kind of a jerk-ish thing to do. So you move on. That is almost always the right approach. I remember one particular instance in which I corrected someone on their Facebook page using not so kind words. I sort of lost a friend that day, and I will always regret it.
Well, I’m here to break the golden rule again. I’m going to correct someone on the Internet. I would have left it alone (I promise!), but the individual decided to use my family as an example to prove her incorrect point and managed to insult us at the same time. I’m not going to sit idly by because I feel the need to, um, provide some additional insight. Unfortunately, the blog’s author is a member of our church congregation. It is possible other members of our congregation will identify my family as the one referenced in the blog (though she does not give names, bless her). I cannot simply let it go unanswered. Full disclosure: The blog post I will reference has a lot to do with alternative medicines and diets. Generally, I have nothing against alternative approaches to health (I hope that is the right way to phrase it, if not I am sorry). My sweet sister does a lot in this field, and from what I can tell, it has helped her and her family quite a bit. I am glad for that and wish them health. Wendy, you and your family deserve every good thing in this world.
All right, back on track. Edit: Her blog has been made private now. Since this post contains no personal identifying information, I’ve decided to leave it up. I think it can stand on its own as an information piece about Spencer as well as a promotion of the strength of unique, individual parenting styles for unique, individual children. I will be quoting sections of the post that I wish to address. I will not focus on the post as a whole because much of it is her opinion on her blog and that is fine. I will pick and choose the sections that deal with my family. The general context of the post is that the author feels that society is becoming more unhealthy and is not willing to do anything about it.
“I have another friend whose son is autistic.” My son has Asperger’s Syndrome. He was technically diagnosed with High-Functioning Autism but only because the new diagnostic criteria coming out soon will eliminate Asperger’s as a diagnosis. It all becomes part of the Autism Spectrum. So, yes, he is technically autistic, but Autism is a HUGE spectrum. We are talking like 500-colors-of-the-rainbow type of spectrum. Spencer is definitely on the high end of it. He has not been condemned to a horrible life. He will simply struggle with certain things a lot more than the general public. It will only get better with age.
The author is not and has never been a friend of my wife’s. I don’t mean for that to sound dramatic, for we define “friend” as someone that we actually have meaningful interactions with. We have never thought negatively of her before (now is a different story), but certainly no friendship has ever existed. The author found herself in conversation with my wife at church. The author mentioned that she had heard that Spencer had Autism. We had never told her about that. What follows in unsolicited advice.
“I asked her what things she has looked into to helping him get better. She mentioned different therapies, and having to have specially trained teachers who know how to handle him.” Jessica remembers the conversation a bit differently. Jessica doesn’t remember referencing any therapies, and I honestly can’t even think what that would be. Regarding the “specially trained teachers”: What Jessica actually said was that we were going to try to make sure that Spencer’s teachers had the resources and training if possible to help him cope and integrate with the school system. We by no means feel entitled to special people just for Spencer, but we will find a school district that matches his needs. To save everyone’s sanity, the teachers will need to learn how to handle him so that they can maintain effective classrooms. We are just as concerned that Spencer doesn’t disrupt other kids’ education as much as we want him to get a good one.
“I asked if she has considered changing the diet, or if she has looked into any ‘alternative’ types of things.” She asked my wife if we had ever considered changing his diet. Nothing else was asked. It was just about diets. I wanted to make this clear because here we have a person, with no close relationship with my wife, who comes up and offers unsolicited advice. We weren’t looking for help. We’ve never even mentioned to anyone else that we were looking for help (except for our doctor). In my mind, Jessica responding “no” and ending the conversation or moving it elsewhere would have been perfectly valid. According to normal social conventions, there really was no basis for a conversation here about Spencer’s Aspergers.
“She poo-poo’d that idea, making the excuse that ‘it isn’t scientifically proven’ and ‘only 50% or something experience any real benefit’.” What my wife actually said was “We looked into it, and we would have to be completely gulten free and casesin free. And the research shows that it is only effective about 50% of the time.” That’s it. She didn’t “poo-poo” anything. I’m assuming poo-poo means “to belittle someone or something”. Another accurate definition is “a very terrible and and inconsiderate insult. It is more terrible then being a meanyhead”. Ok, remember, this was unsolicited advice. You can’t poo-poo unsolicited advice. Let me say it again because I just like writing it: You can’t poo-poo unsolicited advice. I compare it to being a non-Mormon having missionaries come knock on your door. Those missionaries need to have thick skin because pretty much whatever the homeowner says to them is completely acceptable. They are offering unsolicited advice to people they have no existing relationship with. For example: Missionary: “Would you like to learn about the Book of Mormon?” Homeowner: “It is evil and written by a false prophet!” or Homeowner: “You are the son of a motherless goat!” As annoying(read: funny) as the homeowner might be, he isn’t poo-pooing on the missionaries because they invaded his personal space.
Also, the “isn’t scientifically proven” part isn’t an excuse. It is a fact. Full stop. End of story. For every research study you can show me that shows that it does help, I can show you one that says it doesn’t AND one that shows that it will likely lead to bone growth deficiencies in a population of autistic kids that all ready have significantly reduced bone density.
“The last thing she said about it was, ‘Most of the diets say to cut out dairy and gluten, and that’s just not gonna happen with the way our family eats!’ Well ‘course not! Heaven forbid.” This is where it got nasty. Where my wife started to cry, and I started to get angry. This is a misrepresentation. It is written to make it seem as if we are inflexible and unwilling to try anything to help our son. The reality is that Spencer is a very small eater. He is so skinny because he just does not like to eat. He has a self-imposed very restricted diet because it is sometimes literally the only thing that he will allow down his throat. I know it may sound like we are pushovers, so let me share a recent experience.
We make him try a bite of everything that we make at our house. Recently we were making him take a bite of something fairly inoccuous, and he wouldn’t have it. We wouldn’t budge (we never do), and by the time it made it in his mouth, he was full out crying. Not tantrum crying (we know what that is like), but actual sadness, betrayal, break-your-heart crying. After forcing him to swallow it, he proceeded to run from the table and then puked all over the floor. I’d like to say this was the first time he puked because he had to try something new, but it’s not. It’s not even the second time. This is his way of life. We still maintain that it is good for him to try new things because it has, on occasion, led to a new discovery of something he likes. But usually it ends up at near-vomit stage because it is overloading his senses in a negative way.
So, yeah, being resistant to adopting a very restrictive diet will not work with the way our family (specifically Spencer) eats. I’m sorry Miss blog author if that offends your sensibilities.
So her son will get some therapy, and hopefully they will find some good teachers, but man, if that was my son I’d be trying everything under the sun to have him functioning normally! Again, no therapy. Well, maybe later in life after he’s been incessantly bullied as so many Aspie’s are. The author’s last clause is a real biggie. So much ignorance in so few words. Let’s start with the “functioning normally.” We don’t want Spencer to be normal. His Asperger’s gives him a unique, very non-normal personality that we love. What we would like is for him to be able to integrate with a social society that is so hard for Aspies to understand. That really is the big hurdle. Aspie’s are not generally plagued by developmental delays or severe learning disabilities. It is just that so many roadblocks emerge when they can’t navigate the social environment of the world.
Now, as far as her “under the sun” comment, we will let the author get another few sentences in to elaborate on that thought. “So you are just going to sit back and wait for everyone else to change, then?? … You are willing to let your child suffer because it’s too hard to give up wheat? Or you won’t listen to anyone who sounds ‘quackish’ but has actually helped cure children by doing heavy metal detoxification treatments or the like?” I wouldn’t have bothered with this, but she had to drag my family back into the conversation. First of all, I’ve all ready stated my position that I’ve never seen (after much, much reading) any significant evidence that cutting gluten out of my son’s diet will help him understand the social world around him. If all I had to do was give up wheat, there would be no hesitation. Unfortunately, I live in the real world where cures for Autism don’t exist. Frankly, I’m not even sure I want them to exist. So much of my son’s personality is defined by his Aspergers. I wouldn’t want that to be taken away. He just needs to learn to live in this alien world (as seen by him). That’s the real treatment. That’s where we spend hours upon hours every day of our lives researching how to help him navigate his world. We take great offense to idea that we are just sitting about waiting for others to do the work.
I am always willing to listen to the ‘quackish’ people, but keep in mind that we have not labeled the author as such. Just like I would never label my sister as such. I will even grant that there may be something in what they have to say that would benefit Spencer to some degree. The problem is that I have a million (ok, probably more like a few hundred) other techniques/tips/things to try that are on a higher priority right now. So, yeah, I’m sorry. I can’t give priority to your alternative diet ideas because the other three hundred ideas that I’ve seen positive research on are just more important for me to try right now. I promise that once I get through that ever-expanding queue, I’ll get back to you.
This is where it should have ended. She continues to exposit her ideas in the post, but she drags us in one more time. Please bear with me. Some, like my friends I mentioned above, still want to keep their heads in the sand. They still think that some government system or healthcare system has all of the answers they will ever need. More mischaracterizations. Yes, I suppose I am looking to the government to provide a teacher for my son. You know, like every other parent in the school system. And yes, I intend to be involved in his educational plan. Sorry for wanting to be involved in his life. I really do fail to see how the healthcare system figures into our life. I suppose we did visit the doctor to get him diagnosed, so yeah, I guess that may have been too much of a burden on the system? Seriously though, there is no ongoing plan for professional mental health care. It may be necessary in the future, I suppose. I truly hope the author is not implying that mental health issues should never involve professional help.
Ok, we are now at just over 2200 words, so I think I will conclude. Everyone is entitled to their own opinions. They are even entitled to share their own opinions. I may not agree with them, and that’s fine. That’s how the world works. I can even accept that someone might use my family to illustrate their opinions. Fine. But I am not ok with them mischaracterizing/insulting/demeaning us in the process. Now, if the author wants to have a discussion about this topic, I’m more than happy to oblige. Just don’t feel entitled to it.