In search of some middle ground

My first poll ended with an interesting result. I am happy to note that more people are of the view that autism is treatable and so there is hope in autistic children improving and hopefully gaining some level of independence one fine day. However 5 people did vote on the fact that what autistic children have is permanent and so the child should be left alone and there serves no purpose to try and treat them (not unlike the quoted opinion I mentioned in my previous post).

I am a “newbie” in this whole autism world and so I am the first to admit that any knowledge I have on autism has been restricted to what I have experienced so far since Raiyan was informally diagnosed in early December. Call me naive but I really believed that all autism parents were on the same side in trying to care for the needs of our children with autism. I just assumed from the start that it is a given that all parents with autistic children would expect and hope that their children can be treated (especially those diagnosed at an early age) and insyaAllah, they can at least be able to live their lives without being completely cared for by their parents. I had more confidence in this after being told of progress stories of Raiyan’s ABA’s patients and of children of other parents that I met within Learning Ladders. I also read Jenny McCarthy’s book which not only inspired me to start this blog, but also gave me much hope and faith that something can be done about Raiyan.

But after googling “cure for autism”, little did I know that there are actually two camps in the world of autism parents or anyone connected to autism, called the “neurodiversity” group and the “neurotypical” group. Those belonging to the “neurodiversity” group are in support of tolerance of autistic people (or any persons regardless of neurological wiring) and mainly consist of autistic adults but also autism parents too. The “neurotypical” group are those persons that are not on the autistic spectrum (eg. MOI and anybody not considered autistic).

To put it in simpler terms, the neurodiversity group thinks that autistic people does not need to change and instead, it is society and the general public that has to change their perception of what is “normal” and start to accept and tolerate autistic people despite them being different. They further believe that the traits and behavioural patterns of people with autism are part of their personalities so to “cure” them is like taking away the very essence that makes them who they are. Thus derives the view that autistic children should be accepted as they are.

Now I have to declare at the outset that I have only read probably 2-3% of the materials touching on this ongoing battle because frankly, there is just too much information out there that it’s practically impossible for anyone to say they have a really “informed” view on this matter. Nevertheless, being a “neurotypical”, I couldn’t help getting upset and sometimes angered by some of the comments made by this “neurodiversity” group. The comments generally circle around the central theme of “to cure or not to cure” but some of the specific points made are to me just plain cruel. Just to list a few:

1. The idea of “curing” autism altogether is wrong and no parent should even consider it. In fact, according to Wikepedia, being called a “curebie” is considered derogatory! For me, I think the word “cure” is still subject to interpretation for the individual parent. The same goes for words like "recover", “improve”, “progress” and “heal”. An individual parent is still entitled to have their own expectations on how much their child can be “cured”, "recovered", “improved” and “healed” as they are the ones best to judge, equipped with the knowledge of their individual child’s own strengths and weaknesses. I for one, especially after seeing the amazing progress Raiyan has made in the last month, dream that he could be “cured” when he is at a point where he is able to communicate easily with people, able to form relationships with others apart from his immediate family and is able to live a relatively independent life without Jeff and me having to care for him at every time of the day. I don’t understand why parents like me should be ridiculed for wanting this. How am I hurting others, depriving others of anything when I want the above for my child? (or as nya orang Brunei, inda jua ku mengacau ko kali ah). Yes, I have my fears that Raiyan may not achieve what I have dreamt for him but I’m not going to accept defeat NOW, at this early stage... I should still be allowed (and supported!) to strive to achieve this dream, one day at a time and taking any little achievement as a small step towards that recovery.
2. Autism cannot be cured and we “curebies” are merely giving false hopes to other autism parents. Yes, I understand that there are autistic adults and older autistic children who still have their autistic symptoms despite having gone through some treatment. Nevertheless, isn’t it logical to think and believe that research into treatment has improved now compared to 10-20 years ago when these autistic adults and older autistic children were younger? After all, people only started to take notice of autism because of its alarming raising rates in the last decade. According to Holly Robinson Peete during her interview with Oprah, when her son was diagnosed in 1999, 1 in 5000 children was autistic. Now, it is 1 in 120 children. The benefits of early intervention may also not have been apparent and is STILL not well known in Brunei. Hence, I would STILL prefer to give the benefit of the doubt to the ABA therapy treatment that Raiyan is using (which is a relatively new form of treatment for autism) and my optimism is further fuelled by the fact that Raiyan started treatment at 4 as opposed to many of the older autistic children that may have started therapy at a later age.
   Furthermore, autism is a spectrum and not all autistic children are the same. It is a known fact that some progress better than others. But how do you know for sure which “type” your child is and to what extent they can progress without trying out some form of treatment first right?
3. Not everyone can afford the treatment promoted by the “curebies”. Jenny McCarthy was attacked by an autism mum blogger just because Jenny said “she is just like any other autism mother” whilst at the same time, spent $5000 on a heart monitor, hired a private jet to urgently get to her sick son and spent and is still spending thousands and thousands of dollars for hours of treatment, all of these things granted, are not exactly something a lot of your everyday autism mothers can do. But again, I ask why must there be hostility and mockery against Jenny as a fellow autism mother who I see is just trying to bring more awareness on autism. I really don’t think that by claiming she is “just like any other mother with an autistic child”, Jenny expects other mothers do exactly what she does or spends as much as she does. I’m sure she meant it in the general sense that as a mother, she will do ANYTHING SHE CAN in trying to care for her child, just like other mothers will do ANYTHING THEY CAN AND TO THEIR ABILITIES in trying to care for their child. Furthermore she is not just telling her story to the general public , she is trying to direct the attention to the medical authorities as well so that Evan’s progress story can help convince them on the need for more in-depth studies on treatment and that more funding can be provided for parents that can’t afford such treatment.
   I accept the possibility of myself being construed as self absorbed whilst talking about Raiyan’s progress using ABA knowing full well that many other parents aren’t able to do the same for their child. Here I reiterate that by sharing Raiyan’s progress, I aim to:
   a) Lay out more options for treatment (and hopeful ones too) for all parents to decide on, and these may include treatment that before they may not know existed. It is still up to the parent themselves to follow up on it in accordance with their own needs and capabilities.
   b) Highlight to relevant and significant authorities/bodies the great potential of improvement in autistic children early intervention can make so that more expertise and funding can be obtained for this purpose.
4. Autistic adults are saying they do not want to be cured because they are just happy the way they are. I can’t help thinking that for an autistic adult to be able to form this opinion and communicate it to others, they must be high functioning and are those that still able to live a relatively independent life despite still carrying over their autistic symptoms to adulthood. As everyone knows, autism is a spectrum so there are those on the high end, the middle and the low end. Therefore, I don’t think it’s fair for those autistic adults who state the above to claim that they are speaking on behalf of all autistic people as a whole, because there are unfortunately those that are in the low end who I can imagine would crave to be “cured” (again to be interpreted subjectively!) if they know they have any remote chance for that to happen.
5. Patients of down syndrome and cerebral palsy and/or their parents do not ask for a cure so why should we ask for one for autism. I can’t speak for these parents as I have NO IDEA what it must be like to have a child with these disabilities and I don’t know what types of treatment there are available for their children. Again, all I know is if I hear of progress stories of other autistic children where they are able to communicate better, improve their social skills, reduce their ritualistic tendencies and tantrums, I’m going to try it out for my child. Is it really realistic to believe that parents of down syndrome or cerebral palsy patients wouldn’t do the same if the same hope is given to them?
6. When we say defeat autism or hate autism, we hate the child. EH? Again, I see this as just another ploy to put down parents like me through the mere manipulation of words and language. I am not an expert in the technical details of linguistics but never in my wildest dreams did I consider myself to hate my child just because I said I want to defeat “autism” or at least minimise it etc. I still see autism as being a condition that is causing Raiyan to have difficulties in communicating, socialising and opening up to new things and naturally I want to at least reduce these autistic tendencies just so I can hope that Raiyan will eventually be able to do these things.
7. We are not happy with the child God gave us. This is probably the most offensive comment of all. These critics also like to point out how parents like me can say that we love our autistic child and how much joy they give us and never have we dreamt of them being traded for a “typical” child and yet here we are trying to “cure” or “change” them. I have in my previous posts mentioned the emotional rollercoaster we go through in raising an autistic child and that whilst there are times I admit to getting really frustrated with the meltdowns and saddened when I see what typical children can do that Raiyan can’t, in the end I still love Raiyan so very insanely much and he still brings me so much joy in so many other ways. In particular, I love how having him make Jeff and me celebrate all the little things he does (that parents of typical children take for granted) which we consider to be our daily dosage of intoxicating pleasure every time it happens. But that doesn’t mean that I still don’t want him to improve or make him better. Even parents with neurotypical children seek to improve their child everyday, so should we autism parents be vilified for wanting to do the same?
   If you can accept your child not being able to communicate his needs to others, not being able to have friends, not being able to go to school, not being able to get a job, continuously giving in to his rituals and throwing violent tantrums when he is unhappy, and if you are completely agreeable to taking care of your child 24/7 for the rest of his life (and that is when you outlive the child), I am on my knees saluting you for your extraordinary endurance, tolerance and patience.
   Then I am ashamed to admit that I am not that extraordinary. I still find it disheartening when Raiyan can’t tell me about his day. My heart breaks when I see him in his class isolating himself from his classmates. I still get conscious of people giving dirty stares when Raiyan is screaming his lungs out in public. I worry constantly about his limited diet. Jeff and I are constantly taking a gamble in trying out new things with him. AND I am constantly terrified of the idea of anyone hurting Raiyan and him not being able to tell me about it. So FORGIVE ME if I still want to “change” certain aspects of my child but that in no way means that I am not happy for who he is.
   And for this konon movement to expect the PUBLIC TO CHANGE THEIR PERCEPTION OF “NORMAL” and accept autistic people as they are, I expect donkey years to pass before the fat chance of that happening in Brunei.

In the end, I am still back at where I started in that I don’t think any of us should be fighting in the first place. Especially taking into account that autism is such a WIDE spectrum and that an autistic child could be completely different from the next, no one autistic child/adult or autism parent can safely speak for another. We should all be working together and supporting each other for the welfare of our children, no matter in what way we choose to do so, rather than waste time attacking and hurting each other.

If any of those "sharp and witty" neurodiversity critics happen to read this post, I am sure they will just see me as a simpleton, completely naive and utterly inexperienced to share any of her views. But reading some of their comments for the last 2 days have caused me to waste sooo much time being angry and insecure of what I am doing with my Raiyan. And because of that, it took my pweshes attention away from him tepulang!

I’m sure if I wanted to look into this issue deeper, I will find even more countless arguments as to who is right and who is wrong. But I just can’t afford the time to do that (I spend hours on this blog alone! Heehee). Instead, I choose to focus my time on doing what I can for Raiyan rather than being involved in silly banter that takes me away from doing what is most important, taking care of my child.