understanding negative feelings towards autism diagnosis

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I keep trying to figure out why some people get angry or seriously upset and cry when hearing the words, "your child has autism."
My son was just tested and they said he fits the criteria, though because he's 3 they don't want to give an official diagnosis yet. Maybe because I'm on the spectrum myself, it just seems normal to me and doesn't change who he is? I just don't understand why it upsets people so much. Is it because of preconceived expectations of their child's future?

Maybe because I'm on the spectrum myself

You've got your answer.

Most NT parents want children they can boast about or, at least, not be embarrassed by. How can you brag about your 4-year-old's precociousness to your friends and family if they're barely speaking in single words? That said, most parents probably do the best they can for their autistic children once they get over the initial shock and distress.

Personally I wouldn't want any child of mine to have autism - not because of embarrassment issues, but because it's an impairment and I can't see any advantage to it myself. Well, not unless they turn out to be a genius, but what are the chances of that, really?

I think a lot of it is stigma too. Quite a few auties can speak at those ages but develop problems later in their lives. I think it's the idea that if a child isn't normal they're wrong. But the truth is, is that in most cases, different is just different. Even in the case of other disabilities.

For example, I always tell people that blind people can only not do three things - draw, drive and see. One day, there will only be one thing they can't do. Society is versatile in taking care of the differences of many types of people, physically or mentally different. While technology may have moved up to the point where they are essentially equals, society has yet to catch up. The best that you can do is be the best you can be, not subscribe to any preconceived notion and show others who you are - not just autism.

I think the parents feel bad because they know their kid will have problems with things & they don't want their kids to suffer.

My brother is an autistic genius but he still lives with my parents at age 31. It hasn't helped him any at all :/
I guess I just don't understand why it's the diagnosis that causes the reaction. Are people in denial before that? I know my oldest son's life is not going to be easy, he will get bullied, people won't understand him, but I could tell this quite early on in his life. The diagnosis is no surprise, it's merely a way for me to try to help him get through life easier.

All right, so I can't even include being a genius as an advantage :-/ (What is your brother's area of genius if you don't mind my asking?)

I suppose it partly depends on how old the child is. If it's an older one, the parents will have had more time to get used to their child's odd behaviour. But if it's a toddler of 2 or 3, then the parents won't have lived with the autistic symptoms for that long. They can't be in total denial - otherwise they wouldn't have sought help in the first place. But I guess the diagnosis still comes as a blow.

The only parallel I can think of is a disease I'm highly familiar with: IBD. Some people take the initial diagnosis really badly. They think they'll be stuck taking meds for life, worry about colon cancer, etc. But some people are relieved to get an answer. It's all quite variable really.

My brother's IQ is 162. He can speak multiple languages, knows everything there is about electronics and mechanics, insects, can play any musical instrument and has a eat singing voice. But he can barely cook (he's burnt water...) and hardly ever remembers to eat in general. I don't actually think he has the capability to survive on his own. Plus he has this amazing talent for ticking people off because he's brutally honest (at least the truth according to him). He can't lie, and sees no need to play social games and has constantly been accused of things he's never done, or just plain bullied.
Unfortunately, there is no guarantee in life, no matter one's lot.

It could be because they were hoping the problems would go away, and an autism diagnosis confirms that they are permanent.

My younger son developed normally until he was 13 months old- then he regressed and "became autistic". I don't know why or how but I have it well-documented on home videos- you can watch him regress. He still hasn't gained back some of the skills that he had when he was 9 months old. That is sad for me. Children aren't supposed to lose skills. I wish he hadn't lost those skills, or at least that he would have gained them back by now.

I know autism is a broad spectrum, and our experience isn't universal, but I felt when my kids were diagnosed by what I was told (and it mostly correct) that they were getting a bad deal. There are a lot of downsides. Their lives will always be more difficult (even if it's the fault of society rather than them, their lives are still more difficult), and yes they will miss out on things that I personally value. It's possible that they don't value the things I value (e.g. learning to drive, having a friend, going on a date, etc.) but it's also possible that they do... we have no way of knowing because they can't communicate that to us...

Both of my kids, but especially my older son, seriously lack the ability to let me know how they feel. They can't participate in a board like WP- they can't voice their opinion. I think sometimes this is overlooked because you clearly can. I've already had people on here telling me that their lack of communication is my fault because I didn't do the right things. And you know what? Maybe it is my fault. BUT! The fact remains that they would have had it easier, had they not been autistic, they would have been able to communicate.

I think it's sad that they will never be free to make their own decisions. I remember when I was 15, the freedom I felt when I had my own job, and my parents weren't supervising me anymore- I had FREEDOM and it was great. My son is 15. He doesn't have freedom like that. He can't have freedom like that. He requires supervision all the time. He can't walk outside alone. Isn't that sad? I don't know. I think it is.

I fear for their safety. Self-injurious behaviours combined with a total lack of safety sense, it's scary. Both of my kids would walk right into traffic. My younger son is worse for this. He bolts, and he is FAST. He is always looking for water and he doesn't see the danger of obstacles in the way of the water, such as traffic or a 3-story high window... he just totally lacks this skill. He can sort of swim, but not well enough to match his "dare devil" attitude. He would drown if nobody was behind him. And he doesn't respond to his name. He couldn't answer anybody's questions. That is scary. I wouldn't wish that anyone.

Maybe most of all, I worry about what will happen to them when I'm too old to look after them. My boys are going to be really tall and strong. Who is going to care about them? Who is going to want to look after a kid who can't share intelligible thought (even though I'm sure he has it), smears poop, is loud and disruptive...? I don't think anybody is.

It's not about wanting to boast about my kids. It's really not. I'm very proud of my kids. But I think they got the short end of the stick. I feel very guilty that I gave them that stick. I think they deserve better because I wanted my kids to have all the options open to them, I wanted them to be able to do whatever they wanted in life. Hopefully they're happy as they are... they better be because they don't have any damn choices!

That's where my negative feelings towards autism come from anyway...

I see a lot of parallels with the Deaf community. Many hearing parents find out that their child is deaf, and start thinking, "My child will never be able to enjoy music, learn to speak, socialize with others, or function in the world." Some deaf children learn to do all of these things, but more importantly, many learn to enjoy art, use sign language, socialize in the Deaf community, and function in the world. Deaf parents do not see deafness as a horrible tragedy, because they know that deaf people can live happy and successful lives.

Autism can be similar; some children learn to cope all by themselves (they struggle but they learn), others need early intervention but they learn too, others need support their whole lives but they can function with it, and others never do. An autism diagnosis by itself does not equal a tragedy.

I think there's a lot of misunderstanding and fear about Autism out there for those who aren't familiar with it. The popular image, spread by a certain non-profit group, is that it's a plague, an epidemic, something that will steal your child, something worse than death. If that's all you've heard or seen about autism it's probably pretty scary to hear that your child has it.

Yeah, that has to be hard. Regressive autism is something I've studied a little, but there isn't really much out there (that I found anyway). I don't think I would handle regression very well either.



True, there are a lot of people perpetuating the stereotype of autism being an evil disease... ever read that book "I wish my kids had cancer"? And how many times have I read comments from parents wishing their kids had died or developed some horrible illness instead of being autistic... I know it's not an easy life, but why would anyone wish death on a child?
Even just telling someone that my family is on the spectrum results in a variety of reactions, from horror, to morbid curiosity. Sometimes, often, the diagnosis colors the person's perception from where they had no problems with us before and then "you're autistic??" As if we're suddenly no longer human. The word "autism" seems to hold a tremendous amount of power...