Not a lot of people know that I have an autistic brother, you might think it’s because I’m ashamed of that fact…or of him?
That would be a stern No!
I am ashamed…but not of him or his condition…I’m ashamed of the facilities and lack of resources to help him.
No I haven’t really spoken about this to anyone more than a few close friends and family…why? Well because it’s not really anybody’s business and it tends to evoke two emotions;
A smug nonchalance or pity, and when someone is trying to live their life the best way they can the worse thing you can give to them is pity.
Sympathy and pity without thought and a dose of reality makes you donate toys and shoes to starving kids in Africa. It’s a nice gesture but that’s all it is…just a gesture…it doesn’t help the real problems.
Now Marlon is my younger brother by 2 years, after him came a girl and before me was a girl so I missed out on that close sibling comradeship brothers that close in age tend to have. Growing up he wasn’t a difficult child, he developed as a normal kid would, then came the withdrawal and the lack of speech. And as a kid myself this became routine. I guess I had my own battle dealing with, being asthmatic and constantly hospitalized so I missed a lot back then, plus I was four what would I remember??
What I do remember is accompanying my mother to the School of Hope, in August town, Kingston and the routines; Dropping him off and going back for him, being at the bus stop in Downtown, Kingston to head back to Portmore where we lived which was about 30mins drive, as he got to the bus stop he would get his “bag juice” and snack from the vendors outside…come to think of it…I think it was one or two people and they would look out for him…knowing the drill…he chose what he wanted and my mother or older brother would pay…who wasn’t far behind, then the waiting for the bus to leave to go home.
After awhile this routine stopped…
Marlon wasn’t allowed to return to school…he was…for lack of a better term…”expelled”.
You see the School of Hope was a school for mentally and physically retarded children. Back then in 1980s, no one knew what autism was in Jamaica, so he was classified as mentally retarded and sent to that school where he was subsequently expelled because he became ‘violent to some of kids and adults”. It was no big deal to me as I said I was young not privy to all the info, it just meant he was always home now.
The extent of this violence was hitting, biting and strategic scratching (‘scrabing’). I got my fair share of these as I shared a room and a bunk bed with him, and as with any siblings, messing with my stuff and me with his, the loud mumbling, singing certain parts of songs on the radio pretty loudly I might add led to most fights.
His outbursts would continue and intensify mostly from a bit of “family annoyance” and that we were not fully understanding his patterns. I got to understand that these outbursts stemmed from his frustrations of not being able to express himself to the degree that we readily understood.
People in the community would refer to him as my “mad brother”, of which I don’t really talk to anymore because clearly they’re idiots…but I was already selective in the people that I interacted with so that mattered not to me. And that’s how the general Jamaican public dismiss and label things they don’t really understand; homeless people are simply called “Mad Men”, people with any degree of a disability are call “Hhandycapp” and deaf people or any young person with a hearing aid are “Dummies”. I’m not too upset with the labels because that’s part of our culture, the oversimplified labels for pretty much everything, but what it does do is it marginalizes people and their daily struggles, not seeing the ranges of disabilities or lack there of.
The misdiagnosis all those years ago influenced how we approached his development, after the School of Hope there was nothing, no other academically incline option for him. It wasn’t until a couple years ago we recognize that he was autistic based on some research. We were worried mainly because though there might be more awareness of autism in recent times and they are schools and facilities being built to help as well as different programs being developed, these are mostly for young children up to 20 years old, My brother will be 35 years old in July.
Looking back I saw him as just another one of my many siblings, in a large family you are trying to find your own identity, purposes and quiet (God they’re a noisy bunch). Growing up I guess he was insulated by wonderful parents and cool enough siblings. He mostly taught himself to read; he writes with a stencil (which he doesn’t use anymore, but looking through his books you wouldn’t know); he documents and collect things and have them in chronological order which you don’t touch unless he shows it to you; he’s a very curious person and watches you like a hawk…then mimics you until he understands it; watches t.v. on mute (I think everyone should 😀, or not at all). He washes his own clothes and mine when I was living with him, no I didn’t ask nor did I stop him…until I realized my clothes were getting too clean and one of my blue shirts was on its way to being white with the amount of scrubbing, and I know I wasn’t that dirty.
I’m not sure why I wrote this or why I’m even sharing it, I still think this is mostly a family matter and I don’t trust people enough with the responsibility to fully understand unless you grew up with us, but I guess some people will see some sort of similarities in our experiences as we move to highlight and build awareness to all the lives that this mental condition affects.
And I’ve recognized that the highlight is mostly on the children with autism and not the adults that will have to deal the morality of life and its changes.