autism

A conversation with a 14 year old Autistic Girl

Recently I came across a very heart-warming article titled; How You React To Your Son’s Autism When Your Language Has No Word For Autism which you should all give a read; this mother’s struggle will move you to tears.

My God does more awareness need to be raised about Autism. Particularly in the Asian / Arab cultures where some families would rather claim their child is possesed by the devil than label them as Autistic. The mind boggles. It really does. And the problem starts by NOT talking about this issue enough amongst ourselves and worsens when you don’t talk to the autistic individual in question about their experiences.

The article also got me thinking about my own sister whose journey with Autism I told you about last year. Leah (not her actual name, which I kept private in case her friends come across this blog) is a 14 year old Autistic girl who is hella talented and actually really funny. She calls me Didi, a title one gives their older sister out of cultural respect, or you know, because said older sister demanded to be called that. Today, she talked to me about her journey with Autism as best as she could, given that communication is actually a big struggle for her. I thought she did amazing. Here’s her story in her own words.

1. Do you know you have autism & How did you find out? Yes, I was 11 and you (she means me) were reading this book to me. The main character was displaying symptoms similar to how I act and behave. He was different and the book mentioned he had Autism. So I asked you if I had Autism too and you said yes.

Side Note: we sought advice from the therapists / doctors Leah was seeing on when the best time would be to tell her she was Autistic. They advised that when she was ready to find out she would start asking questions herself and that it would be okay to tell her then. I was shaking when I told her.

2. Do you know what autism is? Yeah, it’s a brain disorder which you are born with or diagnosed with later in life. It means you struggle to be social and communicate. You have no idea you are being inappropriate sometimes. It can be severe or mild. Mine is in the middle I think.

Side Note: Actually, accrding to her doctors, Leah’s Autism is severe. But I have not shared this with her.

3. Are there things that really bother you or frustrate/ annoy you? Usually people think having Autism is like having a mental health problem which is not the case at all. It’s not like we’re crazy.

4. Are there things that you are afraid of? Erm, I am afraid of not making friends because of Autism and struggling socially as an adult.

5. What kinds of things are you really good at? Playing the piano, eating and sleeping! I have a good memory because of Autism. I never forget anyone’s birthday.

6. Are you glad we are doing this intetview? Yeah it’s okay. I don’t mind these kinds of questions. I hate interrogation questions though that you guys ask me when I am late coming home from school like; where were you and who were you with?

7. How did you feel when you found out you were Autistic? Nothing major. I was doing fine in school. Finding out made me put more pressure on myself I guess.

8. Do you remember your reaction? Yeah, I asked you if Autism meant I was dying and if I was going to need medication. I was relieved that I wouldn’t need medication.

9. Do you remember what it was like when you were a kid? Yeah, I was happy, I had no idea about the Autism.

10. How many friends do you have? A lot. I can’t count, but I get along with everyone. I am not in a rivalry with anyone.

11. Do they know you are Autistic? Some of them and others guess sometimes. I’ve only told a few.

12. Do they treat you different? Nah, that’s what I like about them.

13. Do you find it difficult to spend time with other people? Sometimes, I get shaky and angry when I am not sure how to act. If I am about to meet someone new I get nervous.

Side Note: When Leah gets angry she actually gets very aggressive. She backs away into a corner and shakes violently. She will physically attack anyone who tries to get close.

14. Do you know of anyone else in your family who has autism too? Yeah, one of my cousins does.

15. Who understands your Autism best in your family? Didi, because you understand why I get angry more than the rest of them do I guess.

16. What kinds of things do you think are funny?Who makes you laugh? Comedy shows are funny. My friends make me laugh.

Side Note: Lowkey depressed she did not say me.

17. What is relaxing to you? Piano music; playing it and listening to it.

18. What do you dream about for the future? That I am successful in whatever I am doing. I want to be a musician but maybe that’s not realistic. If not that, then I want to be a social worker. If the right guy comes then maybe I’ll have a family but I am not fussed about marriage and kids if he doesn’t.

Side Note: she randomly decides to ask me if using condoms is haram at this point which I was not going to include but I feel like this portrays her autistic tendencies accurately.

19. What do think about people who don’t have nice things to say about people with autism? If you have nothing decent to say then bye *shrugs*

20. Do you still struggle with idioms? Nah, I used to though, like when you would tell me that I was the apple of your eye. I’d be like; there is no apple in your eye… I am not an apple… what?!

21. What makes your Autism obvious? I don’t always give the right responses. I am literal. If I annoy someone and they angrily say, “do you mind?!” I would probably say, “no, why would I mind?” They think I am being sarcastic. But I am just answering the question. I am sarcastic sometimes though haha.

Side Note: sarcasm is a family problem ya’ll.

22. What would you do in a crisis? Once my friend and I were walking home from school. She is epileptic and had a seizure and passed out. I was scared. A passer by noticed and asked if we needed help. I said yeah because she’s epileptic. Looking back, I think I should have called the ambulance myself. I know that if I got lost at the mall I should stay in one place and call you but in that situation it was hard to know what to do.

23. What would help Autistic people? Just be understanding.

24. What do you wish people knew about Autism? I guess I wish they knew that we can be as normal as them and we are intelligent.

Autism Awareness Day; My Sister & I

Every year, I tell myself; this year I will definitely do something significant for Autism Awareness Day; donate a respectable sum to a charity behind this cause or do some volunteer work for them. But of course, every year, April comes and goes and I don’t even remember April Fool’s Day, let alone Autism Awareness Day. I don’t have money to give, as I am forever broke, but I thought what’s the most powerful thing I could give instead?

Words.

Sure, I can write about this topic any old day of the week, but we are a nation programmed to love that little bit more in February and call Mum twice on the first Sunday of March. This is not because we are bad people rather, it is due to the fact that the focus of the human brain is easily swayed. So, whilst this topic is (hopefully) fresh on everybody’s radar, I shall attempt to strike the iron while it is hot.

If you follow my blog regularly, you will notice that this is a longer piece than usual, though I will make every effort to keep it precise and to the point. My posts often consist of mini bursts of hilarity- or attempts at it. This isn’t always what I want to write about, fun though it is, but a while ago, I noticed that my 5 list posts tend to do really well so I catered those to the masses more than anything else. Sometimes, I want to write about deep issues but I think; topics like that haven’t done well statistically in the past so let’s steer clear of them. But not today. It doesn’t matter how many views or likes this post gets, but if one person takes something, anything away from it, I will feel like I have accomplished something huge in the name of raising awareness of this day.

My story with Autism can be summarised into four simple words; My Sister is Autistic.

I know where she fits on the Autism spectrum but I wont delve too much into it on here because she is under 18 and I want to protect the details of her condition as much as possible because it’s not really fair on her should anyone she knows come across this post. In fact, for the purposes of this essay, I will refer to her as; Leah. That’s not her name. I repeat; my sister’s name is not Leah but for confidentially reasons, it will be for the entirety of this post.

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Source: Google

Leah was a late speaker, she didn’t say many words until she was four, most people reassured us that this was normal; we, obviously felt otherwise. She was diagnosed with Autism when she was six. The first memory I have post diagnosis is Googling Autism and reading the words; there is no cure. I cannot tell you how disheartening this was for me. Why; you might think. You are not her mother; you might also think. True, but I have always felt maternal towards her due to the significant age-gap between us.

It broke my heart and took a while to accept that Leah would never really be like other children. Slowly but surely though, I began to realise that you cannot fix what’s not broken and Leah was far from broken, she was healthy in every other way and this was a blessing not to be overlooked. She just had one little thing that made her different but it also made me love her even more than I did the day she was born and I didn’t think that was humanly possible.

In fact, everyone loved Leah. She was cute, quirky and unbelievably funny. She was a show-stopper. Everywhere she went; people noticed her and for this reason, I was lulled into a false sense of security that she was going to be just fine; that this whole Autism thing was blown way out of proportion.

That’s when the bullying started.

And when I say bullying, I mean her being at the receiving end of it at school for being different, but also, us getting it in the neck  from every Tom, Dick and Harry about how lenient we were with Leah’s behaviour. I saw a t-shirt once that I seriously considered purchasing, it said; My Child Has Autism; Questions are Welcome Advice is NOT. It was the best piece of merchandise I ever saw online. Though you may think it an unfriendly statement, I cannot tell you how many people believe it is ok to distribute unwanted opinions like its confetti. Or how many of them would tell us that we were giving Leah special treatment for being Autistic. These are all very easy, text book words to say in passing.

What these people failed to realise though, was that behind Leah’s curiously happy face, there was a canvas of very dark and complex emotions that only surfaced when she was away from everyone’s eyes but ours. So, if occasionally eating more junk than the averge child, or watching a few extra minutes of television ensured she slept peacefully that night; then I make no apologies to anyone for our choices. I am not saying it is ok to “spoil” Autistic children. I am saying that ONLY the people concerned can weigh the pros and cons of every situation before executing the decision they feel is right and if they waited for society’s approval to make those decisions, you would have one very distressed child on your hands.

Strangers were the worst sometimes, if you have an Autistic child with a quirk; try explaining it to someone who, for lack of a politer way of putting it; doesn’t give a shit. Leah used to be obsessed with closing doors when she was little. We were at the Mall once and after we entered, there was a stream of people behind us also coming in. She insisted on trying to close the door after each one of them came into the other side and would not budge at all when I tried to move her! Naturally, people were getting irritated because she was slowing-down the flow of crowds coming in; all in a rush. I was used to being stared at for being an adult who had lost control over her ‘troublesome’ child. On this occasion though, one guy shouted a few colourful words at me loudly enough for Leah to hear and that was the first time I cried about this kind of treatment.

Why didn’t you just explain to him what the situation was if you were that upset? I hear you ask. I can’t believe I am about to (very roughly) quote Tupac but…

‘the world moves fast and would rather pass you by, than stop to see what makes you cry.’

Still, adults are for the most part, easy to ignore and for those few to are willing to hear you out; they are easy to convince. How do you convince children though, that Leah wants to fit in just like everybody else? You can’t force children to be friends, likewise, depending on age, you can never fully explain to them that Leah asks the same 8000 questions in the space of 8 minutes because she cannot help herself, NOT because she is being deliberately annoying. You also can’t explain to children that Leah’s constant pointing out of their flaws is not her being cruel, rather it is her making an observation that she does not know has potential negative consequences.

It is a difficult world to live in for ‘normal’ people let alone to those for whom it makes no sense whatsoever. Still, as a family, we try and shield her from as many hurtful situations as possible, though I know that we will undoubtedly be overpowered by a few. We try and give her the same oppurtunities as every child her age. My mother especially, doesn’t want her to miss out on anything. Whereas I worry about overwhelming her sometimes. She is a bright girl though and my family and I don’t want Autism to take away from that fact. We have to fight her corner a lot at school because sadly, if we didn’t, she will fall through a net of forgotten children with disability, because they ‘look fine’ on the outside. She is not ‘gifted’ at certain subjects like most Autistic children, if you were wondering. She does have an impressive memory though (Mashallah) and is a pretty good Pianist, in my opinion.

Leah and I don’t have the positive, sunny relationship we once did when she was younger, thanks to a combination of Autism, puberty and just the overall tragedy of the teenage years, but there isn’t anything I wouldn’t do for my sister. She is literally, the light of my life. I think she gets annoyed of how overly protective I am of her. Sometimes when we go to the Mall, I spend half my time telling her about appropriate social conduct, or things people tend to find annoying (so that she can avoid doing them) instead of just enjoying a day out. This may sound miserable & excessive, but I just want to equip her with as many tools as possible to help her function in the real world because the fact of the matter is…

I don’t know what the future holds for Leah; all good things I hope, but there is little frame of reference available for me to go by. Doctors and Therapists are forever telling me they don’t know whether she will be a fully functioning adult. Then there are those  who know a sister’s, husband’s cousin who is a doctor despite Autism. Not forgetting those of course, who are always reassuring me that Einstein was Autistic, therefore Leah is bound to be fine. The last group tend to piss me off the most between you and me.

Knowing that your child will most likely grow to be a functioning adult is a luxury we don’t have and this is why I worry so much. I came across a beautiful video once depicting the lives of people with Down’s that are functioning well in society. It was one of the most touching and reassuring things I ever watched and I found myself wishing there was one for Autism; for all I had seen thus far was horrific documentaries.

If you made it this far and are wondering if there was a point to all this rambling then it is this;

Be kind, Be Understanding, Be Accepting when dealing with people with Autism. I need you to know that Autistic people are complex, repetitive and literal beings- amongst many other things. If they ask you the same question 1000 times, try not to be irritated. Sometimes the worst thing you can say to them is; you just asked me that. If they recite the same story to you again and again, don’t shoot it down. Repetition to them is like, breakfast in bed to you after a long hard week at work; comforting.

Be Kind, Be Understanding, Be Accepting to carer’s of children with Autism. Believe me when I say these people don’t sleep sometimes worrying about their child. We don’t want your advice and we don’t want your theories on the correlation between Autism and Vaccinations. You want to be considerate? If a family is dining out and their child is throwing things everywhere and having a meltdown- please know, it is scarier to them and more mortifying for the child than it is to you. Sure, you want to have a nice meal out, you earned it and you didn’t ask for this unwanted side of drama, but please make the choice of being that one person that doesn’t glare or leave the restaurant in a huff; we notice when people do this and it kills us inside. A little understanding goes a long way.

ALL the opinions expressed on here are my own. Other families with Autistic children may share different opinions to myself. You are a star for reading so far. Please tell me your thoughts about this essay; I love to hear from you. Actually I have scheduled this post to be published in April (I am writing it in March) and I have just realised that I will be on a plane back home from my vacation when it goes live, so be nice to me in the comments for I will be very jetlagged by the time I get to read them! Now for some light-hearted stuff to end;

Leah’s Top Five Awesome Autism Moments!

  1. Pointing to an overweight woman on the bus  and loudly exclaiming that she was “unhealthy” and being indignant when I shushed her- “but you said to always tell the truth!” I mean how could I argue with that?
  2. When she was asked to count some coins on the table, Leah did exactly that, she counted the NUMBER of coins rather than the AMOUNT to which they totalled much to the hilarity of the person that assigned her this task. She still doesn’t know why that was so funny.
  3. The advantage of Leah’s fantastic memory, is that you never forget anyone’s birthday thanks to her. Also, she is all about the history trivia if you are interested.
  4. Idioms are a foreign domain to Leah, when I told her she was driving me up the wall once, she frankly explained; “I can’t even drive until I am 17!”
  5. In attempt to educate (a then 6 year old) Leah, I told her that if ever she felt uncomfortable in a situation to scream “help!” So once, she refused to leave the Mall. Irritated, I grabbed hold of her hand to take her to the car. Naturally, she chose THIS moment to start screaming, “HELP!” To say I was mortified, is putting it lightly… we don’t look a like so as far as observers were concerned; I kidnapped this child 😂