Awareness is not understanding

In the first place, save for developmental milestones as indicated from a medical perspective, we really should not be measuring our children. Every child is different; one will talk quickly while another will walk after a few months. Children surge ahead in one area but are far behind in another. This is exacerbated by special needs. A special needs child is going to take longer to develop certain skills that we take for granted.

After potty training for more than two years I finally got my son out of diapers about 4 months ago. There are occasional accidents but he’s primarily diaper free. To the parent of an average child it is difficult to imaging the potty training process taking two years, right? In fact, I’ve observed other autistic children that are still being potty trained at 10+. Understanding Autism means you recognise that each child develops at his or her own rate and there is no judgement of the child or the parent when things don’t go according to ‘schedule’.

There are certain behaviours that tend to characterise autism. It doesn’t mean I have a bad child and neither am I a bad parent. Not to negate the power of prayer and faith but if licks and prayers could cure autism, then there would be no special schools.

My son really struggles with sitting still for long periods of time (I’m lucky to get ten minutes out of him), most children do but it is exacerbated by autism. When he can’t take it anymore, an epic meltdown is right around the corner. I do have certain strategies I use to prolong the time he can sit without all hell breaking loose, but they will only go so far. I’m not going to beat my child publicly to satisfy onlookers (I don’t think shaming a child is an appropriate method of discipline); during a tantrum he needs to calm down. I don’t think a ‘cut tail’ will assist in the process.

It is so heartbreaking, sometimes in the middle of a tantrum my son will say ‘Mummy I want my mind back.’ I understand that often his behaviour is beyond his control and we have to work together to fix that and it will take time. We do try to avoid places that cannot accommodate him as much as we can (I’m not insensitive to the fact he is disruptive to others) but sometimes there is really nothing I can do.

Understanding autism means that a tantrum from a child does not mean the child is bad or they are poorly disciplined. It happens and many services have not taken this part of the population into account.

This is also reflected in the educational environment; it is the prevailing belief that a regular school can adequately educate a special needs child. While hunting for a preschool for my son I came across teacher after teacher who assured me they knew exactly what to do with my son in a school environment. Upon closer inspection it was abundantly clear they were not equipped to meet my son’s needs and I opted to homeschool, which I don’t regret. For all his challenges by the time he finally did go to school he was better equipped than the children I know that attended preschool. I’m happy with the school he attends because they take the time to work with him one on one at his own pace (I actually had to buy new books for him every term as he moved so quickly). How is a special child getting that in a class full of children? Not possible.

How is a single teacher going to meet both normal and special needs in one class during the limited classroom time? Isn’t that a bit unrealistic and demanding? Understanding means you get that it is impossible for the needs of a special child to be properly addressed when they are competing for attention with more than 20 other students.

You know how Trinis are experts in everything? We could judge pan although we’ve never struck a note in our lives and we know who is a good chef when we’ve never cooked a dish, ever! It’s the same way people that are aware of autism are also autism experts. Strangers don’t blink to give parenting advice from an expert position. You want to know who’s the autism expert? I am. I am the expert on my son, I have to work along with a team of professionals, the paediatrician, the allergist, the teacher, the aide, the psychologist, the therapist etc. for my son’s well-being. I also have to keep track of all his prescriptions and therapies and ensure that everyone on his team is on the same page. While I am a wage earner, this is my second full time job.

Understanding autism means if you know one person with autism, you know one person with autism. It’s impossible to be an expert to an autistic child you’ve just met.

While awareness programmes are great, (it would be a lot worse if I said to someone ‘My son is autistic’ and they had no clue what I was talking about) I think we need to move past that and get to the stage of understanding. Autistic people don’t stay little forever, what happens when a child with autism is no longer little and cute? What options are available then? Where are the autistic adults who are positively contributing to society, to act as role models? Honestly, we need to rip off the band aid of keeping up appearances, and be real about the things we are dealing with. I’m not saying you should have your child walk around with a poster board advertising the fact that they are autistic, rather I’m saying there is no need for the denial and secrecy that so many are bound by.

It contributes to this crazy cycle of awareness without understanding. I am not shy about my son’s diagnosis in the least. I guess having a few cousins with learning disabilities makes it less of a shock. We already have the experience of special schools, therapy and medications as a family, there is no stigma attached to it.

A learning disability or autism to me is as innocuous as saying someone has brown skin. That’s when you know you’ve moved from simple awareness to understanding.