And thats the hidden truth. As a teen, you already have so many things to deal with however big or small and it can drive you crazy! Being the autistic sibling, I can’t even imagine what it must be like but being a sibling with a brother who has autism, I can say that although I appear to be positive and happy, there are times were I just go into an all time low because I feel that I have so much on my plate.
I still remember the day when my mum broke down infront of me upon hearing the news of my brothers autism, and that moment will forever be engraved in my head.. At the time, it did seem like Autism would suddenly dictate my brothers life because we didn’t know anything about autism, apart from it being classed as a disability. It’s funny really, once you hear that someone has a disability you suddenly feel sorry for him/her and you instantly think about all the differences that set you apart from that person. You think that this disability is bad because it’s restricting this person and now the course of this persons life will have to change completely for the worse, that they can’t do certain things because their disability doesn’t allow them too. I remember thinking these things that very night when we were told about my brothers autism. I thought about lots of things, and looking back I cringe at those thoughts because I feel that I shouldn’t have thought those. These thoughts included: How will my parents cope? Will he lead a normal life? Will he be able to speak? Will he need supervision? Why did God do this? What did we do to deserve this?
Those last few thoughts just make me want to slap myself silly. Because this isn’t anything to do with God at all. Sure, if your believe in fate and destiny.. But I believe that it can happen to anyone. Not because God decided to ‘punish’ us. For example, losing your sight is classed as being a disability and this could happen lets just say.. having acid being thrown onto you (it does happen)- and it can happen to anyone, n0t because God decided to do it.
I also remember that for weeks, I just felt uncomfortable and upset and out of place because I had my own set of problem which I really don’t want to go into at the moment, that I had to deal with. And yes, those problems even though they seem millions of miles away from my head right now, will always be with me. I felt as though that I was at the lowest because of those problems and my brothers autism just piled on top. Aside from the usual ‘How do I deal with it?’ I was also thinking about my parents, the questions they will ask which I wouldnt have an answer too, what to tell them for comfort.. I guess it being me who went with my mum to hear the news felt like I suddenly had a responsibility to ‘fix’ things or make things ‘better’ and the thought of this made me just.. want to stay in bed and never come out. Yet on the other hand I also hated myself for being so selfish and even took it out on myself. I remember thinking that I must be the most horrible daughter in the world, putting my problems first and not doing anything. I was also angry and confused with my siblings.. because they seemed normal enough, as if it was nothing. I was angry because they weren’t the ones watching my mum crying and unable to do anything. I was confused because of the way they were taking it. And I also found it ‘unfair’ on how they didn’t seem to have the responsibility too- (I’m the second eldest, and theres four of us) I felt as though I had enough problems as it is, with the A+B (dont want to mention), feeling like I’m failing college, no motivation, letting my fears take over me, confidence issues, anxiety.. all sorts- like they didn’t seem to have any worries..
I think what made me change my whole outlook was the following question- ‘Does autism change the love I have for my baby brother?’.
And the answer to that is… *drum rolls* No it doesn’t. Some people might as well have been criticizing me for even contemplating such a question but guess what? I would be criticizing myself too. Why would I even change the love I have for my brother because of my brothers autism? It’s just a silly question! But as silly as it was, it gave me motivation to change. Being the second eldest, I have only ever been there for witnessing my sisters birth (not there as in labour but there as in seeing her for the first time after birth) but even still, I can’t remember any feelings because I was young.. (I was around 6 at the time she was born). But seeing my baby brother for the first time at the grand old age of 13, I remember having this instant love for him and knowing whatever life threw at us, I will always love him and being the elder sibling for the 2nd time, I’d protect him no matter what. So why would those feelings even change now that my brother has autism? Ha, it won’t ever change. NOTHING should and won’t ever change it.
I suddenly knew that the first thing I had to do was to do my research and be there as a.. Encyclopedia as well as a source for comfort for my parents, and thats what I did. I became very involved with my brother’s autism, making sure I listened carefully during appointments, making sure he recieved some form of therapy to improve his skills or intensive interaction to improve his eye contact or just the general relationships with his family I guess. I also figured that I can’t blame my siblings that they don’t have any responsiblity, because I kind of persuaded my brain to think it is and even though my parents tell me to take it easy since theyre the parents, the fact is that I can’t take it easy because I will also have this feeling that I SHOULD be doing something to help my brother.
That all happened during the first year. And a lot has improved- we have more up days but hey, I STILL have those days where I feel like absolute crap.
My cousins came over their little brother is 2 years younger than mine. And I’m not going to lie- when he talks, when he eats, when he just understands people around him, it does bring back those thoughts and I suddenly just compare my brother to him. Yes MY brothers diet is limited. Yes, I know that MY brother isn’t able to say words (yet) let alone sentences, and he may not be able to communicate fully now BUT he is improving- and each time he improves, it just makes everything worth the while. Every minute of me putting my college work aside, handing in assignments late, not paying attention in class was worth it when my brother suddenly knows how to wear his cap, or understands to sit down when I say ‘sit’. I’m not saying that its ok to ignore college/school work- they’re important but at the time I felt like I had no choice.
It still is difficult. I still struggle with doing my college work and going to work and feeling guilty for not being with my brother. I sometimes struggle with problems A+B, I struggle with trying to do well in college, I struggle with a lot of things.. but it is so much better right now than the situation I was in 2 years ago. I think thats the key thing that teens with autistic siblings struggle with- juggling it all (at least I do but hey, people may have other problems) But it is do able- you just need to make the time and I guess make a mental timetable though for others, its just easier to write it down and tick it off. One thing that I wish was there 2 years ago was someone who could help me as a teenager deal with my brothers autism at the time. I think its just so easy for a teenager to feel lost and out of place, especially in unknown territory- thats why I started up my project ‘Autism and the Teen Sibling’.
If your interested and want to find out more…
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And if you want to submit a post (whether your an autistic sibling or have a sibling with autism OR even want to have your day) email your submission to firstname.lastname@example.org
I guess the reason why I chose to write about this topic was because I wanted to let people who are in a similar situation to me that its ok to have those down days- we all get them. Don’t beat yourself over it. And by doing so, you won’t achieve anything now would you? I should also mention before some get the wrong idea- that autism or any other disability shouldn’t dictate the way you or any other person to live your/their life! Each and everyone is different, so don’t allow stereotypes to dictate what they can or cannot do AND please, don’t disabilities change the love you have for your sibling- not for the worst.