So I left a comment on someone else’s autism blog several years ago. Today someone replied to my very old comment telling me I need to learn how to read and that I am self-righteous. The article had to do with a mother trying to elicit high-fives for her choices for her autistic child. I did not support her notions. I told her so and why. I wasn’t nasty or mean, just outspoken in the fact that I disagreed with the mother’s choice. The new commenter was insulted that I dared to disagree with this parent. In fact it’s as if simply because this mother put herself out there, meant you as an individual couldn’t take the author to task for her perspectives. If you write an article, (or even a tweet) but can’t back yourself up, then something is wrong with your premise. Heck, on the internet, you can even have a reasoned argument, but that doesn’t stop people from giving you some rather unwarranted, unfriendly and unwelcome even hurtful input. You shouldn’t get insulted. It’s the nature of the Internet beast. Either stand your ground, argue your point, or move on. Lesson One:…If you don’t want input on your opinions, don’t put it out there on the Internet.
I have found that in writing about autism there are several reasons why people write blogs, articles or comment on the internet. Either they want to learn from others, their child’s disability is about them, and/or they want support for their choices. The reactions to discussions vary from some politically correct attack on the notion of free choice, a “how dare you question someone else’s parenting choices” perspective, to others telling you that abortion is better for your disabled child, ala the atheist Richard Dawkins. Who was also taken to task for his vile tweet saying it was the moral thing to do, to abort children with down syndrome.
The interesting point is that those who wish to learn do not resent that others take them to task, or that others who have experienced raising an autistic child, will offer advice from personal experience. (FYI- none of us need advice from anyone who has never raised a child, or never raised an autistic child to boot. There is something wrong with “autism-unaffiliated” people who need to do this. The ones that give me the biggest chuckle are the malignant narcissists who think they can tell you what to do because they have peripheral knowledge about someone with autism and that ipsofacto makes them an expert. So ignore these individuals. I do.) I personally have learned quite alot from other parents, autistic self-advocates, special educators and psychologists/psychiatrists over the years. They have helped our family in ways that I think are immeasurable and I quietly thank them for their input everyday. Now it’s not that I listened to every bit of advice by any means. In fact some of the advice was way off base, denigrating to our children ( ironically the insulting recommendations of “your children can’t because…” mostly came from the “professional sphere”), or simply not applicable to our situation. Not everything will work for your family or your situation, but it is interesting to note that even the tiniest bit of off-handed advice may simply be what you needed the most. So do not reject everything out of hand, think about it first and see if you can find some bit of something that might be useful. Also remember that some of the best advice comes from the strangest of places.
Then next, there is the parents who make their child’s autism or disability all about themselves and not about their offspring. These parents talk about themselves incessantly; how what they did for their child affected them and why this was the best for them. You never hear about the child, the issues or how anything was handled for the benefit of the child in question. You never get a sense if the child is happy, fulfilled or progressing. Ignore them. Don’t even waste your time there. You can leave a comment if you want, but the time I did that a moderator wrote me back that I was being mean and cruel to the parent. Seriously. I remember the incident well. (Hubby hates that I can do that). A women in a support group had written in that she was so upset that at the end of a nice day when the family wanted to go get ice-cream, her HFA son couldn’t decide if he wanted to go with them or stay home. That he stood in the driveway crying about the choice. This mother complained that all she wanted to do was get ice-cream and that it was ruined because of what happened with her son. Well I gave this “parent” what for in spades. Subsequently, the moderator emailed me that she removed my comment and that people sometimes just need a virtual hug. I told her that I no longer wanted anything to do with any of these people who couldn’t see the pain in their child’s inability to choose and that I have no need for such selfish parents. They were happy to see me go since I did not follow the woe-is-me parenting perspective that was relished by these moderators.
Then there is the parent who writes in so that everyone can tell them what a great job they are doing with their child. They tell you their choices and then want accolades for what great parents they are. Telling them what they did was inappropriate elicits an infantile melt down. Do they really think that when they put their actions out there on the internet everyone is going to agree with them? If you can’t handle that people are going to disagree with you, especially when they can be anonymous, then the Internet is not the place for you. Also, why does anyone need some strangers AOK about their parenting choices? Are you that weak-willed and spineless to really worry what others think? If that is the case then how are you ever going to get your child the future they are entitled to if all you do is worry what others think? Do what needs to be done, fight like hell, and tell the rest of the world to lech lazazel if need be.
Parenting autistic children is not for the weak of heart, mind or soul. It is an all consuming life effecting role that noone asks for, but one at which, we have no choice but to excel. If you are afraid to do your job, your job will never get done. If you worry what others think all the time, your job will never get done. If you are the center of your child’s story, then your job will never get done. But if you keep reaching out, trying to learn, study, asking questions….seek and ye shall find…then you will do your job. Now what this all means in the end, unfortunately there is no predictor. Only time will tell.