Friday, September 29, 2017

My rant on discrimination: Unwelcomed autistic toddler

Yesterday, I needed to rant on Facebook, which I rarely do. So I did. I wrote on my wall:

"Please just let me rant. I'm now learning what it's like to have my child 'not really welcomed' at play/ enrichment centres etc because of his autism. The hundreds of questions that are thrown at me the moment I mention 'autism' is astounding. It's under the guise of being more informed to cater to my son's needs, when it's clear that they just don't want a 'troublesome' kid around. Please excuse me for being over sensitive. I am entitled to how I feel after so many 'rejections.' Inclusivity and neurodiversity have a long way to go here in Malaysia. Nevertheless this mum will move mountains before I let anyone tell me where my son does or does not belong. #needtodevelopthickerskin"

What sparked my rant? Well, I had made another inquiry to a child enrichment centre nearby, asking about the types of play sessions/ gym classes that they offer. I got a reply back and when they asked me about Arif's age, I let them know he's three, and I also revealed to them that Arif is autistic. It's not that I want to keep harping to people that my son's autistic. I just believe in transparency.

As I expected, they replied with a rather nervous/ uneasy tone. In one email, they posed a barrage of questions, ranging from what kinds of classes he's attending now, if they've benefited him in some way and if he has sensory issues etc. 

The point of all these questions, supposedly, is to help them decide if there's a programme that would be beneficial for Arif. But a mother's intuition tells me that they're asking these questions because they don't want a child who will be disruptive and cause them to receive complaints from other parents.

I've experienced a similar line of questioning from a few kindergardens I've contacted. Do I mind questions about my child? Of course not. But again, my intuition tells me that they're asking these questions to find a reason to turn us away, as they cannot do it outright.

I know that Arif would benefit from an Early Intervention Programme, specially-catered to special needs kids. But in my area, they are very expensive. So I wanted to explore the possibility of a kindergarden nearby that would be willing to include him for some activities, even if it's just a few hours once a week.

But many of these service providers are quick to remind me that they don't have therapists or teachers trained in special needs. Thing is, Arif already has therapists, and I'm not looking for therapy. So in actual fact, what they're implying is they won't be able to accommodate nor cope with my child's special needs. Fair enough.

Others, who consider themselves to be professionals in child development services, have told me that they can't see how Arif can benefit from joining them. Really? Playing and mixing with peers, even for short periods of time, can't be beneficial for my autistic child? Oh, I suppose you wrote a book on that. 

Please don't get me wrong. I'm perfectly capable of seeing things from the service provider's perspective. I get it. But I am, first and foremost, Arif's mum. I am an autism parent. It is up to me to stand up for him when he cannot fight and speak for him when he cannot speak. 

He is three years old. And all I want is to find a place for him to socialise, both with special needs and with neurotypical kids. I just want to offer him new experiences and let him have some fun. 

But this is proving to be quite difficult. It seems, here in Malaysia (and possibly elsewhere), people are nervous about neurotypical kids mixing with neurodivergent or special needs kids, be it the service providers or parents in general. On top of that, they base their assumptions on stigmatised views of autistic children, when autism is a spectrum and each person is different.

Let's remind ourselves that I'm not talking about school here. I'm talking about play/ enrichment classes for toddlers and young children. Why the discrimination? Your guess is as good as mine. Stigma? Special needs is contagious? Atypical behaviour gives them the heebie jeebies? You tell me. 

It would seem to me that people who aren't really informed about autism (although they want to appear like they know it all), think it's more beneficial for neurotypical and neurodivergent kids to be kept separate. Beneficial for whom exactly? You can make your own conclusions.

At this stage in Arif's development, I'm trying to get him some experience in a mainstream setting, as we try to figure out our next step. Is that so wrong? With virtual doors slamming in my face, I can tell you that I've just about had it. The lesson that I take from this experience is that I have to face the facts. My child will continue to face discrimination in one form or another. 

For autistic people and their families, a welcoming environment is hard to come by. I have heard about families throwing birthday parties for their autistic kid, and no one turns up. I have heard about families getting kicked out of restaurants, because the owner says their autistic kid is 'disturbing' customers. I have heard about an inclusive kindergarden that is losing its neurotypical students because their parents aren't keen on having their children mix with special needs kids.

Autistic kids, teens and adults, as well as their families, appreciate support from their community, because even a small gesture can make a world of difference in enhancing their quality of life. And on the surface, the response received is, "Sure, we totally understand that special needs people need community support. Yeah, we're all for it!" But deep down it's more like, "Please go somewhere else for that community support. Don't shove your autism down our throats, we cannot find even the smallest way to accommodate you."

While attending an autism parent workshop at We Rock the Spectrum recently (a place that incidentally always makes us feel so warmly welcomed), I was reminded that parents need to practice CAT - Compassion, Acceptance and Tolerance, in order to cope with the challenges of raising autistic children. But I can't expect CAT from everyone. Even family members can struggle with CAT at times. Once, when Arif was misbehaving slightly during an Uber ride, the driver told me, "Just treat him normal, and he will be!" No compassion, acceptance or tolerance was present there. 
And as much as I've developed thicker skin and a heart of stone to cope with challenges and judgement, I have to accept that not everyone is ready to accept my autistic son. Arif is non verbal, but maybe someday, he'll grow up and say, "Mummy, please don't tell anyone I'm autistic." Because he doesn't want to be discriminated against. 

Online, I've read about parents who have had to fight tooth and nail for their high-functioning autistic child's right to be educated in a mainstream school. 

I've also read about how mainstream schools and teachers, in particular, are unable to cope with autistic students due to their level of anxiety and behavioural issues that cause problems to other students, the teachers and the autistic student himself. 

In this setting, there are certainly two sides of the coin to this challenging and sensitive issue. Some autistic kids will thrive in a traditional school setting, while others will thrive in specialised programmes. Others do best by learning at home and attending additional classes that cater to their strengths and interests.

Again, I'm not talking about traditional classrooms here, which we don't have any experience with yet. I'm just looking for opportunities for Arif to have fun, to be accepted among his peers. In the words of Temple Grandin, Arif is "Different, not less." But outside the autism community, these words are yet to truly resonate.

You can agree with me on my rant today, or we can agree to disagree. It's fine. I just needed to get what was weighing on my mind out there, so that someone else who might be experiencing the same thing will know that they're not alone. Autism parents need therapy too. This is my form of therapy - talking about my journey on the worldwide web. And if you don't have an autistic family member or friend, maybe what I've shared will make you think about your own level of compassion, acceptance and tolerance for people who are different.

But you know what? That was yesterday and today is a brand new day, full of possibilities. When you're an autism parent, you have to roll with the punches. You can't let things get you down for too long. I've ranted and written about it, so now I'm moving on.  Lesson learnt, onto our next adventure...

To close, I'm sharing a few online articles and videos on different incidences of autism discrimination. It's definitely something worth thinking about:

"Being autistic isn't something that someone should have to be ashamed about. It's not something that should be used to discriminate against people, not something that should keep others from disclosing for fear of how they'll be viewed by society."

Autistic man taught himself law wins discrimination case

"He called me stupid twice. Calling someone with a mental disability 'stupid' is similar to mocking a guy in a wheelchair." 

When a school makes you feel like they don't want your child

"For the first time on our journey with autism we experienced what it felt like to be discriminated against. For someone to exclude one of our sons because of their needs."

"To feel like someone doesn't want your child around, it just rips your heart out."

"The crew made the best decision for the safety and comfort of all customers..."

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