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.

Brown in a world where (it sometimes feels) there is only room for white.

I appreciate that the title makes this post sound like it is about to narrate the world’s biggest sob story, but you know what, it’s my sob story, and I will tell it how I want. Before we begin and for the purposes of clarity, I would like to point out that a) this post will be discussing skin tones and NOT ethnicity and b) when I say “black” and “white”, I mean dark and light-skinned; broad and inaccurate terms that have unfortunately been deemed acceptable to use nowadays when describing skin colour.

I am taking a deep breath as I write this because, as a dark-skinned person, there is huge room for bias in this account, but given that this is a topic I care deeply about, I want to do it justice both for me and for everyone reading it so here goes nothing, well no actually, here goes a lot of things;

For as long as I can remember, I have had an issue with the colour of my skin and it has taken me a very long time, thanks to people, culture, self-esteem issues and the stupid make-up industry, to make my peace with it.

To brief you a little; I come from a culture where being fair-skinned or “white” is a very sought after quality. The love for this attribute has been passed down generation to generation until people now not only believe that it is acceptable to prefer light skin over dark, but somewhere along the line, they have also convinced themselves that they don’t do this at all and that any claims of otherwise are hallucinations on the part of the dark skinned person.

I find this notion so ludicrous, that I’m willing to bet that it is from situations such as this that the term ‘salt on wound’ originates. I have experienced an array of situations where my skin colour was the centre of attention for all the wrong reasons. Some incidents were serious, others not so serious but most were detrimental to how I felt when I looked in the mirror growing up.

In childhood, I remember playing outdoors with a bunch of children, minding my own business as you do, when the father of those children called them back indoors lest they become black like “that one” if they play in the sun for much longer.’ As a child, this made me feel embarrassed about being “black” as an adult however, I am hurt and indignant that a child was judged on something they 1) had no control over 2) wasn’t even bad in the first place.

At school, I had every African ethnicity forcibly attached to me, whether I liked it or not, because ignorance had reached levels whereby it was believed that dark people belonged exclusively to African backgrounds and any other possibility was a mere rumour. Because children are vulnerable to suggestion, I grew up believing that being called Sudanese was the ultimate insult until my mother challenged; why is that bad? Are Sudanese people not humans like you me and everybody else?

During my teenage years, I don’t think anyone owned more whitening creams than I. Anybody out there remember Fair & Lovely? I had enough tubes of that cream to open my own store. I wanted to be “white” so bad, that I pleaded with my mother to buy me an endless supply. I don’t know about white, but looking back, I think it actually made my complexion look grey; less radiant and more corpse-like. When I wasn’t abusing my skin with chemicals, I was avoiding the sun like the plague. Naturally, the adult me now has severe vitamin D deficiency, all in the name of being more white; more beautiful.

In life, I now laugh at how stupid people were for believing that being light skinned meant you were more beautiful and thank God that times have changed. Then slowly but surely, that laugh changes into a hesitant smile when someone tells you that  you are beautiful despite having dark skin and expects you to embrace their words as complimentary. The hesitant smile soon turns into a pained expression when the first description you hear being given to a man about a potential spouse is that she is ‘pretty and white’ like the two traits are love birds eternally destined to be together. The pained expression becomes a frown when a patronising male friend, needlessly trying to boost your morale, reassures you that he prefers brown girls as his snow-white girlfriend hangs off his arm, thus negating that declaration.

But, the frown only changes to tears when they tell you that this light skin nonsense is a figment of your imagination which you are using to feel sorry for yourself, that you alone are responsible for the damage it has inflicted on your confidence and how you see your beauty inside and out.

And although these tears have broken me down at times, they have also empowered me enough to know that I am beautiful because I am the funniest person on the planet. If that delusion isn’t beautiful then what is? Pray tell.

Beauty will never be justified by how you look on the outside alone, so if you’re waiting to get validation on how beautiful you are based on height, skin-colour, ethnicity and anything else which you have no control over, you are in danger of denying your soul the nourishment it deserves.