Category Archives: Uncategorized

Hating people who say autism can be “cured”

I mean, what do they mean “cured” or “healed”??? It’s not a disease that it can or should be “cured”.

These messiahs of hope (I blame Pandora) preach about how parents should do XYZ and ABC therapies because that “definitely works”. Uh. No.

Just like every person has different taste buds, autism affects everyone differently. As I’ve said before, when you meet one person with autism, you meet just one person with autism. Therapies are a guideline to certain things that may help to teach the autistic person skills to deal with the neuro-typical world. But it’s not one size fits all. Just because one therapy works for one person, doesn’t mean it will for another. It’s a trial-and-error process. Compics and flashcards work for many, my brother doesn’t really like them. Period. He prefers signs. Surely I’d be stupid to keep forcing something on him when he doesn’t like it…so what if it works for your child? It doesn’t work with him.

I give you: Jenny McCarthy. The Horse Boy.

No, no, NO!

My brother doesn’t need to be healed or cured or whatever other nonsense. He needs to learn how to handle the world. Do I wish he didn’t have autism? Sure, sometimes I do in my most despairing moments. But his autism makes him the sweet and innocent boy he is, not some crazed teenage boy (for which I’m sometimes thankful; have you seen what some teenagers get up to nowadays!?).

If I see another person telling me how to heal or cure my brother, I’m going to blow a gasket. Autism is life-long. It’s not going to go away just because you say so. The more you preach to the world about how your child has beaten autism, the more I’ll think you’re a quack and the more I’ll think your child was incorrectly diagnosed in the first place.

Shutdown or speak out? What November 1 means to me.

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Twitter – that wonderful giver of delightful and disastrous news – was where I first read about Communication Shutdown. The web site said:

“It’s a global initiative to raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.”

On the face of it, I thought: “Well that’s great…they’re raising money for a good cause!”

But somewhere in the back of my mind, a tiny itch was forming.

It eventually hit me that it was the second sentence I had a problem with. How on earth is avoiding Facebook or Twitter supposed to help understand how people with autism feel when it comes to communication?

I fully understand that currently, social networking is a major factor in communication between people. However, it’s not the end of it. Let’s say I log out of Twitter or Facebook for the entire day. I can text, call or knock on my flatmate’s door and strike up a conversation with her. My not logging on to various social networks has nothing to do with social communication. If anything, it might help wean me off my Twitter addiction (which is an entirely different story!). Say I even manage to stay offline for the day. I’ll be back to tweeting and Facebooking the next day, won’t I? I’ll be smug and self-righteous about how I played a role in Communication Shutdown and now I TRULY understand autism. Not.

My brother has autism and I still don’t understand it fully. Until I moved to UK last year, I dealt with autism on daily basis and I still don’t understand it fully.

How dare anyone think that by giving up Facebook and Twitter for 24 hours, they will understand what it is like to be autistic?

I’ve seen various reactions on the internet that don’t agree with Communication Shutdown. I know where they’re coming from, but I don’t see the point of those either. April is Autism Awareness Month and innumerable events take place then in many countries to raise awareness about autism, much like October is breast cancer awareness month, November (or Movember as it’s called!) is prostate cancer awareness month. Surely these are there to facilitate awareness of the causes. Did we really need another day – that too, a contested day – to show awareness of autism?

You want to raise money for autism, go for it. But don’t tell people they will have a better understanding of social communication problems that autistic people face. For one, not all autistic people communicate the same way: my brother can’t talk. Another child with autism can. If you’ve seen one person with autism, you’ve seen ONE person with autism. This is NOT a one-size-fits-all scenario. And second, many people with autism use the internet to communicate, or use technology to do so (my brother can’t…see why one size doesn’t fit all?) … telling “normal” people to get offline is quite possibly going against how many autistic people communicate.

If you want to understand the problems my brother faces however, get offline, chuck your phone, stop talking to everyone and don’t communicate even by signs. And shut your eyes for good measure.

Then come and tell me you understand a bit more about autism.

For the record, I’m not shutting down. It won’t give me any understanding of what my brother goes through; I’d rather continue with how I always do. Autism is a part of my life. I’d rather stay connected, engage with others and spread whatever awareness I can on a regular basis.

Why would you hurt my brother?

Abuse. It comes in many forms: physical, emotional and mental.

When a person cannot communicate well, when a person is unable to defend himself/herself, it’s sad that that person gets picked on in some way or the other.

I read this open letter to DQ from Alterna-Mom’s blog and was aghast. A child with infantile autism and speech delays was mocked. Simply because of the way she speaks? Do you know how much time it can take for people with autistic disorders to communicate and be comfortable with themselves in unknown situations? How is it possible that compassion, understanding and tolerance disappears when it comes to something different?

In the comments of that blogpost, a reference was made to a UK court case. I immediately Googled it and found this: an Aspergers teen was reportedly tortured for days but the people who did it were let off with a community service rap (I do object to the use of the word ‘evil’ in the first sentence; not because I don’t agree, but because that doesn’t sound like balanced reporting, no matter how depraved the act was).

According to the news report, and I quote:

They kicked and stamped on his head, repeatedly punched him in the chest, beat him with a tennis racket, scratched his arms and leg with sandpaper, and threw him down a steep hill.

The terrified teenager – who suffers from autism and Asperger’s Syndrome – was also pelted with dog mess and forced to drink alcohol until he passed out. And, in a final humiliating assault, they applied tape to his genital area before ripping it off.

Community service orders and a curfew was handed out to the offenders.

A curfew. I had a curfew – still do when I live with my parents – and the worst thing I ever did was not clean my room. And my curfew wasn’t even in place because of that!

Why would you hurt my brother or someone like him? For fun? Because you’re bored? Because you think it’s funny to hurt the defenceless? My heart bleeds for the girl who was mocked and the 17-year-old boy who endured what he did.

Really … Why would you want to hurt my brother?

I judge my friends by how they treat my little brother

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It’s true. I do.

When I make new friends anywhere, it’s important for me to observe them when they meet Karan. Or if I mention he’s autistic, I want to see what they say. I’ve had a few people say they’re very sorry and I immediately think of ways to avoid them. I mean, I love Karan and I’m not sorry for who he is. Yes, it would’ve been easier for everyone – and even more so for him – if he wasn’t autistic…he would’ve led a fuller life, but his autism makes him who he is and I love him for all his quirks. Yes, even when he chewed my Lil Ms Chatterbox bookmark. And tore my t-shirts. And spat over my photo frames. Okay maybe I got a little mad. Moving on… 😉

It’s important for me to see how they behave around him, if they’re comfortable or not. Another indicator of this is whether they include him in conversations. I’ve had people pretend as if he wasn’t there – their logic I suppose was that he can’t understand us (or so they thought) so no point in talking TO him. People who talk to him…I appreciate them.

So yes…I judge YOU based on how you treat my little brother. Sue me.

Finding autism everywhere

I was on the Tube (London Underground for those who may not know) last evening. On the District line to be precise (random thought: why are the Tube lines the colours they are? What makes the District line green? What makes the Central line red?).

But I digress.

I hopped on to a train and picked a seat. It was blissfully empty, mostly because I was at a stop away from central London. When I sat down, even though I had my iPod Shuffle blasting Muse into my ears, I noticed a movement from the corner of my eye. When I looked ever-so-slightly to my left, a young man (possibly mid- to late-20s) was sitting at the end of the carriage, with a soda plastic bottle in his hand and he was grinning. And giggling. My knee-jerk reaction: what’s wrong with him? Has he had too much to drink?

In another 2-4 seconds, I realized, quite shamefully, I was wrong. He started rocking, babbling and laughing. He was most definitely autistic.

People were looking at him. Staring even. Avoiding him. They were afraid of him.

I left the train a few stops later and he was still there, crushing his soda bottle and stuffing his fingers in his ears. And my wish for him as I stepped off was that he reached wherever he was going safely.

You know what struck me right after? People are going to be afraid of my beautiful baby brother. He may be 14 now (though he looks much older), he may be taller than me for a good amount and he may be a hefty guy. But he’s still a baby. A baby who cries, crushes bottles, giggles randomly, stuffs his fingers in his ears when surrounding noises are just too much, and rocks when excited.

And people are going to be afraid of him.

Because he’s different. Because they don’t know what he’s going to do next. Because he doesn’t fit society’s expectations of what is “normal”.

FYI: being “normal” is over-rated.

My brother: the actor!

Now, I love my brother very much. He’s the apple of my eye, my little pumpkin and a sweetheart. He’s also quite a fraud. And he pulls wool over my Mom’s eyes, and sometimes mine, quite convincingly. He’s a class actor in his own right.

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Case #1: Wearing shoes

Karan is quite capable of wearing his own shoes. Velcro ones that is; he can’t handle lace shoes whatsoever because he doesn’t understand how to tie them. Which is why we get him velcro shoes and sandals only. Anyway, he’s learned how to wear them, so you’d think he’d wear them on his own all the time. Right? WRONG.

When Mom tries to make him wear his shoes, or I do, he fumbles. And crumbles. And cries. And tries OH-SO-HARD but those shoes will stubbornly not go on his feet and we end up making him wear them.

In school, when his teacher tells him to do it however, they go on OH-SO-QUICKLY. I saw this for myself two days ago, when Chirag was at our house. We were getting ready to go out and I, in a fit of laziness, asked him to give Karan his sandals so I could make him wear them in a bit. Chirag told Karan to wear his shoes. I protested saying he wouldn’t do it. Thanks Karan, for proving me wrong. That little acting hulk (read: Karan) just opened up the velcro at Chirag’s urging and slipped his sandals on just fine, thank you very much. No crying, no protests, no tantrums. That’s it, I’m going military on you Karan. Watch out…I know you’re acting!

Case #2: Eating food

Karan can eat his food with a spoon. Me, I’m toughie on this. When I sit next to him, he scoops his food fine and eats it all and just struggles towards the end when there’s very little food left and slightly harder to scoop. When Mom’s next to him, he takes AGES and ends up making her scoop for him. That little actor.

And he can chew his food just fine. Didn’t he chew all those chicken kababs and Toblerone chocolate in a hurry two days back? Ummm yeah, not when it comes to food he doesn’t like. He’ll keep it in his mouth for ages and just stare at us with his mouth stuffed but NOT swallowing. Karan, eat those veggies NOW (those who know me might point out that I don’t eat any veggies anymore; I’ve done my time. It’s his turn now!).

Although, once he turns his Puss-in-Boots eyes at us … no, no, stay strong and firm Devina, stay strong and firm!

Let them stare if they want to.

Guest post by Adita Divecha, Karan’s mother

Karan never cries when he hurts himself.

What I mean is that if he bangs into a table or chair or if he falls he does not, like other kids, start crying or rub the area where he got hurt. He will just sit down somewhere and perhaps start playing with his ball or just lie down on the bed.

I come to know he has hurt himself only if I see a bruise after a few days. I don’t think he can relate the pain of hurting himself to crying. At times after I see a bruise on his body with any swelling and if I touch it, he has even started laughing hysterically.

Of course this does not mean that he never cries. He does cry at times, suddenly, without warning and starts hitting himself on the sides of his head. Sometimes so hard that his forehead and sides become red. At such times I feel so helpless…is his head paining? Or is it his stomach? Ears? Or is it because a sound upset him? Or the tone of my voice? All I can do is to stop him from hurting himself further is to hold his hands down and calm him down by speaking in a firm but calm voice. These episodes last for at least 30 minutes to one hour.

I have also found that he calms down faster if I sing his favourite songs to him. At times when I hold his hands down to stop him hitting himself , he grabs my blouse with his teeth as if to bite me. He has torn many of mine and Devina’s clothes like this. I used to get embarrassed earlier when he used to behave like this in public as people would stare at him as if he was badly behaved, but now I don’t care what they think.

Let them stare if they want to.

Moments of laughter with Karan

Guest post by Adita Divecha, Karan’s mother

Looking after a child with special needs – especially one who is diagnosed as ‘low functioning’ on the autism spectrum – is quite a challenge. There are so many things that come up on a day-to-day basis that leave you confused, angry and helpless. At times the whole day goes by, and you feel you have not achieved anything positive.

But life with Karan is not all problems and difficulties. He provides us an opportunity to laugh too. There was this one particular time when he saw Devina sitting next to me and chatting. He came running and jumped between us and put his hand on my mouth to stop me from talking to her. He then pushed Devina away and hugged me … and both Devina and I started laughing. Then there was the time when he used to wait for Devina to come home from college. When she was back, he would follow her around the house and then go up to her room where she used to put on the songs he likes. He would sit there sighing with content. He used to be Devina’s tail when she was here and still is when she comes on holiday. He misses her a lot I think, because whenever she comes back, he ignores her for a few days to show her that he is upset with her for not being there and then warms up to her again.

Do you think autistic children know what death means?

That’s a question I asked myself again and again and again when my Gappa (my mother’s father; I call him Gappa as my child-self couldn’t pronounce Grandpappa properly and the name stuck) passed away last year.

Did Karan know, or understand that his grandfather was no more?

Death is a difficult concept for me to get around as well. The answers of what happens after people die are thrown about by religions, asking us to just accept what they say: Heaven, hell and what-have-you. Abstract concepts, but nothing real. If I have such a hard time understanding it, obviously it’s hard for him.

But what I want to know is, did Karan understand that his grandfather was not coming back? Did he miss him? Did he ever think, oh I wonder where my Gappa is? At the funeral, Karan was a gem – didn’t trouble us at all. Almost as if he understood this was serious.

My Dadi (father’s mother) is currently breathing only because she’s hooked up to a life support machine. Karan has interacted with her only on family vacations to India and when she’s visited Dubai. He hasn’t gone to India in many years, because it’s a nightmare getting him on a plane, and travelling with him is perhaps do-able if my mother and I have male help. For one, Karan is massively huge for his age (I have found out that he’s much taller than me now and he’s quite hefty too), and it’s very hard – although not impossible as my mother and I have found – to take him to a female toilet when he wants to go, so a male presence has been a must for the last few years.

Anyway, he’s normally wary of new people, but usually by the end of my Dadi’s trip – or ours there – he has warmed up to her (yup he had to go through the warming up process every time). The life support machine will be switched off in a few days, once my father gets there, once I get there.

We can tell him all we like about my Dadi, but will he get it? Can he comprehend it? I know he misses people if they’ve been there constantly in his life; it’s certainly the case with me. He misses me, judging from what my Mom tells me.

Does he know what death means? I don’t think so, and I don’t know if that’s a blessing or a bane.

Teething troubles with Karan

Guest post by Adita Divecha, Karan’s mother

One of the problems I face is that Karan does not like to open his mouth when you ask him to. This was quite a problem when his milk teeth were falling – some have still not fallen. When he feels the tooth is loose, he tries to pull it off with his fingers and keeps on fiddling with it. He makes his face, clothes, the sofa and the bedsheets all bloody. He does not allow me to check his mouth and holds it tightly shut. And he does not cry.

Sometimes he has put pencils or crayons in his mouth and its quite difficult to take them out. I have been bitten a few times while trying to take things out of his mouth. Right now, he is getting a new molar but the old one has not yet fallen. He was biting down on the right side of his mouth and grimacing so I thought he had hurt himself there or perhaps had a blister. After coaxing him for many days to open his mouth slightly wider, I have found that he is getting a new tooth except it is coming out in his palate on the right side next to the molar which has not yet fallen.

Something will have to be done to ease his discomfort. He is of course not going to sit in a dentist’s clinic and open his mouth to let the dentist check and do something about it. I have been told that children like Karan are usually taken to a hospital. Their teeth are checked and x-rayed and then worked on usually under anaesthesia as they refuse to sit in the chair, open their mouths and keep it open for the dentist to work on. I am sure that other kids also don’t like going to the dentist but with special kids like Karan it is difficult and different.