Autism: A Sister's Perspective

My brother was born when I was 4 1/2. I remember how excited I was to have a younger brother. When he was a toddler, I would play this game with him where I would tilt this big, long box against the couch and then we would slide into it. In another game we played, I had taught him certain words and when I said them, he would repeat them – often in an incorrect, funny way. For example, I would say “dinosaur” and he’d say “dine-sore” or I would say “turtle” and he’d say “toytle” (or something to that effect). All was good…until he was around 2 1/2, when he started developing symptoms of autism. He became distant and disconnected, he lost his speech, and he wouldn’t respond when we called him. Needless to say, our games that we played stopped – the connection was lost. I wondered what was going on. At first, it was suspected that he had lost his hearing. Finally, sometime after he turned 3, and after months of trying to find out what was wrong, my brother was diagnosed with autism. I was between 7 1/2 and 8 at the time – which, luckily, was old enough for me to understand what was going on and understand what autism was, but young enough for it to not be quite as devastating as it might have been, had I been a bit older. That’s not to say, however, that growing up with an autistic sibling didn’t have its challenges. There are many challenges to growing up with an autistic sibling, especially in cases as severe as my brother’s – with no speech, and aggression that could be severe at times.

First of all, that “normal” connection and interaction between siblings is often times lost, especially in severe cases. Therefore, given that I have no other siblings, I grew up with the mindset of an only child. Even though every once in a while, I would wish that I had someone to play games with, etc., most of the time, I didn’t really mind feeling like an only child since I was always the more independent type, not minding doing things by myself. Because of that, I also don’t remember ever being jealous of my brother for getting or requiring more attention than I did, even though that sometimes happens with other families. But I think another reason I was never jealous was because it seemed that there would always be time set aside for me as well and I never really felt like I wasn’t getting enough attention.

Although I didn’t experience jealousy in that regard, I was often jealous of “normal” families…families who had the ability to just up and go on vacation, or even regular outings, without having to worry about getting a babysitter or respite worker (and sometimes not being able to get one). I’d say that was the hardest challenge of all for me, personally – not having the freedom to do anything and everything we, as a family, might have wanted to do. And then, of course, when my brother was out in public with us, there was the embarrassment from the rude stares we would get, along with the occasional snide remark. But as you get older, you sort of start to not give as much of a rat’s ass what people think – their ignorance is their problem.

Furthermore, holiday gatherings with the family are often difficult and rather tense because of a lack of true understanding of autism that family members can have, so when my brother does anything he’s “not supposed” to do, there can be this big, unwarranted hullabaloo. Needless to say, this lack of understanding can tear families apart. 

Going back to being the only sibling of someone with autism, it’s easy for one to feel that he/she has to make up for the autistic sibling’s deficits, especially when there is pressure from the parents. For example, since it’s 99% likely that my brother will never produce grandchildren for my parents, there is more pressure on me to, which I’ve been reminded of from time to time, especially as I’ve gotten older.

Last, but not least of all of the challenges related to having an autistic sibling (and I’m sure I’ve unintentionally left a few out), is the feeling of isolation at times – feeling like there is no one else who goes through the same thing. I’ve always been aware that there are others like me who have dealt with having an autistic sibling, but I’ve often felt like I was the only one who had a brother with such severe autism, as most other cases I’ve seen haven’t seemed as severe. However, there have been a couple of exceptions.

Despite the many challenges of growing up with an autistic sibling, there are, believe it or not, advantages as well. I quickly developed a different perspective on life – one that is more understanding, non-judgmental, and less ignorant…especially of those with physical and/or mental disabilities. Of course, one thing that added to that perspective is that I also grew up with a grandfather who was wheelchair-bound due to muscular dystrophy. Also, I think it made me stronger – made me feel more capable of handling stressful situations because some of them don’t seem quite as big after growing up with an autistic sibling.

I can’t say, however, that the good necessarily outweighs the bad. In most situations, I wouldn’t hesitate to say that it does. However, I’ve seen how evilly cruel autism can be (especially severe autism) – how it can tear families apart; and imagine – especially in my brother’s case, given that he can’t speak – being trapped in your own mind, not knowing how to effectively communicate what you’re thinking, or that something is wrong. So I guess what I’m trying to say is that growing up with an autistic brother has been sort of a mixed blessing, but it wasn’t any sort of blessing (not even a mixed one) for my brother. That’s why I truly hope that research will eventually (hopefully sooner rather than later) find a definite cause for autism (so far, there have only been theories) so that a cure can be found to conquer this cruel and evil disorder.

P.S. By the way, my brother is 21 now and has been living in a group home for the past 5 1/2 years or so (living there during the week and coming home during the weekend), while still going to a special school (which he can stay in until next year, and then he has to go into an adult day program) and in those 5 1/2 years, his aggression has gone down about 90% and even though he still can’t speak, he’s learned a lot of other things. The group home has really been a god-send – not just because of the much better behavior and all the stuff he’s learned, but also because of all the stress it’s taken off of my parents.

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