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.