Autism, we need to talk…

Lately I’ve been feeling kinda guilty about not paying as much attention as I should to autism. I haven’t been as diligent with Raiyan’s programme, I clearly have not been as frequent with updating this blog, I’m so behind in reading other blogs on autism, I haven’t even touched a book on autism in months and my involvement with Learning Ladders Society in helping spread autism awareness has substantially reduced too. It almost seems like if I’m in a relationship with autism, it’s at a point where I’d need to have that “talk” with it and suggest that perhaps we need a “time out” or a “break”.

In all fairness, there are justifications for my neglect that I shall attempt to put forward here. For starters, Raiyan’s programme is not as specific as it was before as now we are meant to do more creative things using natural language, like creating stories together which I am the first to admit I completely lack creativitiy in! Hence, it is not as structured and because of that is trickier to follow through (though there is still no excuse to not do anything!). At the same time, with him progressing well in Year 1, we are spending more time catching up with his school work as every day, he has a new home reader book to go through (where he is now up to level 7!) and every week, there is always at least 2-3 pages of literacy and numeracy home work to complete.

In terms of reading up about autism, I simply haven’t had much time to do so because I’ve been busier with work and I also plead guilty to letting my mind focus more on losing weight at the moment (5.5kg so far!:-)). And lastly with regards to the society, I am less active now since for this year I am no longer a member of the Committee.

Having said all that, there may also be other deep-rooted reasons if I am going to be completely honest. My estrangement with Raiyan’s programme may be also due to my state of comfort or even to an extent, complacency that Raiyan is already doing so well on his own, without having me sit with him and go through his therapy materials with him. He is also constantly occupying himself with some activity and hardly goes beyond his 1.5 hour daily limit of TV that I don’t feel as worried about not engaging him because he’s already engaged himself. If it’s not playing with his blocks, he’s playing with his food basket and setting up his picnic with the teddy bears, or he would be resurrecting his own zoo or Jurassic park with all his animal/dinasour figurines, or he would be drawing and writing up stories in his drawing block or at the very least, he would be playing chase or some interaction game with his siblings and his nannies.

On the whole, it really just boils down to what Jeff and I have recently realized and that is how deeply immersed we actually were with autism last year that it really did seem like we were in a relationship with it! Of course we didn’t have much choice then as there was so much work in trying to get Raiyan to where he is now. But it wasn’t just about Raiyan and his progress. Subconsciously, our minds were filled up with nothing but autism. Our conversations were always to do with stories of autism, be it Raiyan’s, or any other stories we had heard of both from reading about it or seeing it ourselves. Our free time was always spent with some activity on spreading awareness, which to me is great but not when I realize now that the only people who would ever take notice are those that are directly affected by autism themselves and this means that us going that extra mile merely resulted in an overexertion on our parts without there being any fruits to our labour. Also, we realized we were treading on unpleasant grounds by starting to be a tad “oversensitive” with others who we felt didn’t “care” enough about autism and what we had to go through and would often waste time analyzing why people didn’t act a certain way or say a certain thing when we talked about autism. Only to realise, again, that it’s not because others do not care, but it’s because they have no reason to and that is completely normal.

I’ve also actually gotten more and more cynical from reading the endless amounts of articles and blogs about autism especially when the debate over vaccines and recovery come into play. I soon discovered that the more literature I read about autism the more confused I got! So much so that I think that is probably the real reason why I’ve strayed away from reading too many of them (except for teenautism which I’m completely addicted to!).

So during these times of what we feel to be us “cheating” on autism, Jeff and I have been spending more quality time together and not even thinking about autism. We’ve been paying more visits to the cinema, the spa, the gym and have even managed to bring the kids out for a family outing every weekend for the past few months, a luxury that looking back we certainly did not enjoy in 2008. We even managed to get away to Singapore for 5 days with just the two of us and it was absolutely wonderful. I’ve even found myself to once again be able to happily hang out with my girlfriends without any teeny weeny bit of expectation that they should ask me about Raiyan and his autism. In fact just the other day, one of them specifically asked me about autism and its traits and what were Raiyan’s obvious traits etc, and I didn’t even for a second get impatient over the fact that all of this she could have easily found in my blog and instead, rationally and very calmly told her what she needed to know without having that incessant need to go that much further to make sure she gets the WHOLE picture. I know now that is just an impossible feat AND if she does want to know more, she knows where to find me right?!

But the thing is, despite this so called “liberated” feeling I have, I still find that inner voice in me saying “don’t get too comfortable, autism is a lifelong condition and don’t think for a minute that you can free yourself from it blah blah blah” or “are you crazy to slow down your pace? Raiyan’s not completely recovered yet! You should still be hard at work and be in a non-stop action to improve him blah blah blah..”

In some ways I guess these voices are still good to have as they serve as a constant reminder that autism will probably forever play a big part in our lives and that I should never be naïve enough to think that we have overcome things and that we can get back to our normal lives.

But it’s not like I expect to go back to our old “normal” lives. It’s just adjusting to that “new normal” where I try and attain some semblance of our old lives but to also take on board all the life lessons and the challenges that we’ve accumulated this past year. Hopefully we can use them as tools in handling what the future holds for us whilst also preserving our own identities separate and distinct from the autism. That’s not too much to ask is it? :-D

The Journey Continues

At the dawn of the New Year, I was at one point contemplating changing the direction of this blog to focus more on just the therapy, the society and our relationship with the school and not so much on personal stories about Raiyan (you know entries like “Bossy Boy” and “Chubby”). Instead I wanted to share such stories in the “Pweshes Diaries” blog which just generally talks about my children’s antics.

It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.

Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.

Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.

The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.

So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.

At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.

However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.

So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.

I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D

2009- Bidding adieu to troubled thoughts

This past year I have learnt so much and Alhamdulillah some lingering insecurities about my knowledge on autism and how to handle it have been replaced with a renewed confidence in my own personal beliefs in how to best raise Raiyan and help him handle his autism.

Even though admittedly I’ve always been drawn to debates like how a driver finds himself forced to look at roadkill, I’ve now pretty much abandoned the possibility of any common ground amongst the various camps in the autism community because autism is just too wide an issue comprising of thousands of nuances in severity, symptoms, reactions to treatments, sensitivities and beliefs.

But just for closure’s sake, I am going to state right here what I have learnt to accept:

1. I don’t believe vaccines cause autism but I do think that there are some children that have some kind of pre-disposed gene that may be made worse by vaccines and this may lead to more obvious autistic traits. I believe Raiyan was born autistic but because he was 7 weeks premature, his immune system was probably weaker and environmental factors may have affected him more and made his autistic traits worse.
   

2. I fully believe in the powers of early intervention and thus parents rather than continuously living in fear and denial over whether or not their child is autistic or not, should just seek help and start their research into the many types of available treatment as early on as they can.
   

3. I fully believe in the powers of ABA or any behaviour modification therapy as the basis and the mechanism to treat the child-whether it’s to treat obsessions, repetitive behaviours, speech, sensory issues, motor skills issues and social skills. I believe that Raiyan worked hard and was continuously motivated not only by the rewards he was promised but by his own successes at the end of it. Of course, the first few weeks or months or even years would be hard but we always have to picture the end goal and providing no verbal and physical abuse are involved, a parent should not have to be guilty about subjecting their child to repeated amounts of teachings and disciplining because we are only doing this to help our children in the future. Susah sekarang, senang kemudian kan..
   

4. I would prefer more energy being exerted to focus on finding appropriate treatment and fighting for governments to provide treatment both medically and educationally rather than spending resources and energy on finding a cause and cure.
   

5. Autism cannot be cured. This is in the sense that you can’t just turn an autistic individual to become “non-autistic”. The autistic way of thinking will always be present and I have always believed that’s what makes these individuals so special that if you even begin to understand it, you would be quick to think how ludicrous it is for anyone to search for a cure to exterminate it.
   

6. Autism however can be recovered and I do believe some parents who have said their child has “lost the diagnosis.” When Raiyan was diagnosed, he scored under average for simple things like knowing the purpose of objects, describing the attributes of things and recognizing basic emotionos because unlike typical children, those things did not come naturally to him. But now, he is able to do them because he has been “taught” it through the therapy. Along with constant teachings of many other things and Alhamdulillah with Raiyan being able to generalize what has been taught to him, Kerri thinks he’s on the way to losing his diagnosis and is quickly catching up with his peers! Having said that, traits like difficulty with social cognition and sticking to rules of conversation would probably always stay and would be something that Raiyan would need to work on for life. Those are the autistic aspects that will probably stay with him but that’s OKAY. Having those issues do not preclude him from leading an independent life. When I talk of Raiyan improving, progressing and even now I am more comfortable with saying, RECOVERING, I am looking towards him growing up to be able to live independently and adapting to situations whilst being able to "handle" his autism along the way. Because I know Raiyan is on the higher end of the spectrum and with how much he has succeeded in the past year alone, why shouldn’t I have such dreams?

I am not writing all this to convince others to share my points of view. More than anything, it serves as a reminder to ME as to how I really feel deep down about all this because I still find myself getting easily swayed after reading the countless amount of autism literature out there.

I need to start focusing on what I personally believe in and not waste further time deliberating about why others do this or that or say this or that. I’m also tired of fearing how others may interpret my blog because I know not all autism parents would agree with me and would still find fault with what I’m doing with Raiyan. But at least, I have tried to make clear my positions on the above contentious issues.

What I would still love to do is find other parents, even if it's just a handful, that are in the same boat as me who-

• strive to keep the picture of autism a positive one;
• accepts that these kids are hard work and require constant dedication and attention;
• understands that no parent is in any position to judge what another parent does;
• do not resort to name-calling or attacking language;
• are not guilty or insecure about their actions over their child for fear of being judged as being a bad parent;
• feel blessed with seeing their children’s progress; and
• celebrates every little achievement (that incidentally would help make it easier to put aside any negative and attacking comments as nothing more than fluff!)

Wishing all pweshes autism families out there a great and fruitful year ahead!! Amin!

Awareness conscience

I decided to place my Pweshes Philosophy on autism on the main blog page as opposed to a link (which I have noticed have hardly been visited lately) because my sporadic "awareness conscience" has been creeping up again lately.

For those who don't know, and this is especially for overseas readers, "autism awareness" in Brunei is only in the sense that some have heard of the term and when they have, it's usually associated with something depressing and sad. Even now, I still find people getting uncomfortable when I start discussing Raiyan and his condition when I'm trying my very best to discuss it in the most positive light.

Naturally, I still think there is a serious lack of autism awareness over here and this is worrying because without an informed understanding, there are parents out there who still choose to be in denial over their child’s potential condition as they are so scared to just hear the words “your child has autism/is autistic.” Because of that, they decide to wait and wait for their child to start talking and for their child to outgrow their tantrums and quirky behaviours, sometimes until as late as they are 6 or 7. It is a scientific fact that early intervention can help these children so it is unfortunate that just because of the fear these parents have, their children may have possibly missed the boat in trying to get the benefits of the early intervention.

I badly want parents to know that autism is a condition that is “part” of the child and just because you hear someone telling you that your child has autism/is autistic, that doesn’t mean that he or she is now somebody different from who you’ve been cradling and looking after from the day he or she is born. It is a “condition” that can be worked upon through the appropriate education and behavioural therapies. I am not talking about giving the child drugs or any other remedy that will make him better overnight. What Raiyan is fortunate to have is an educational programme prepared by the most amazing behavioural consultant and therapists for him to learn to cope better in this world. Through this programme, we also get to witness how incredibly smart Raiyan is too. And yet, he is still autistic but far from anything depressing and sad, that autistic part of him can at the same time be humbling and a joy to observe too.

And for the public and society in general, please, QUIT thinking that autism is a label for a child and that is something that defines the child for who he or she is because I repeat, it is a MEDICAL DIAGNOSIS and condition. Individuals with autism have their own personalities, their own likes and dislikes, their own feelings and there are millions of autistic adults out there who are thriving in this world so again, parents do not need to be so scared of receiving that diagnosis. What is important in these early stages is to try and work on the disabilities as much as the child can handle and of course within our means and just hope and pray for the best.

I’m sorry, but at this time of better awareness and understanding in other parts of the world, there is just no excuse to not do anything.

Hope Won

When Barack Obama won the election last week, Oprah Winfrey said “Hope Won.” For parents with an autistic child especially, hope plays such a primary role in our lives that I’m sure for some, Obama’s journey and victory resonates a somewhat familiar feeling because we ourselves are firsthand witness of what hope can achieve despite the uphill struggle we have to endure in raising our children.

Both Obama’s campaign and victory could impart so many things that we can learn from and take away positively for us to start looking forward to a brighter future:

He proved that if you are smart and have an in-depth knowledge of what you are doing, you will succeed.

He showed how you can start from the bottom with nothing, but with continuous tireless work, you will get to where you want to be.

In the face of shallow provocation, he exudes patience and a gentle toughness and avoids regrettable acts by maintaining calm and choosing to think things through before taking action.

Those who voted for him demonstrated how very possible it is for people and society to be open to change and to depart from something that is traditionally and comfortably acceptable in their minds.

Both Obama and those who voted for him encouraged others to not fear difference or diversity despite the repeated personal attacks on him by his rivals in an attempt to instill fear of something different or unfamiliar. And throughout, Obama demonstrated an unruffled demeanor and pure classiness when sticking to the issues and choosing to not retaliate even an inch to all of those appalling attacks.

All of the above principles, Obama elegantly encouraged and upheld consistently with the simple message of hope.

On top of the daily struggles we autism parents go through in raising our child(ren), unfortunately I have also found that the autism community unnecessarily contributes more to these heartaches and headaches with its own politics and war of words. It is quite difficult to find an objective point of view on issues that range from the choices of treatment to the risks of vaccination without also having to read judgmental and harsh comments deriving from opinions ping-ponging from one to another. One page out of Obama’s book that we can certainly learn from is to try and understand everyone’s points of view objectively, to listen with an open heart and an open mind and to steer away from jumping into conclusions or making rash decisions and judgments over the actions of another parent or child. We have to learn to set aside our petty disagreements and learn to find and embrace the common ground we have amongst ourselves and that is the hope for a better future for our children.

I have had my fair share of bumps along this pweshes journey and I don’t expect them to stop any time soon. But in a twisted way, I have been thankful for the episodes that I’ve had because it was through those experiences that I have been taught the power of hope and faith that things will in its own way look up and get better, so long as you work hard and carry on with the best of intentions. And Alhamdulillah, hope has blessed us and rewarded us with Raiyan’s amazing progress every single day and with this progress, we are more than happy to share our story and offer the same hope to other parents.

That’s why I think I have been so passionate over Obama’s victory to the extent that I’d get defensive towards skeptics who write me off as another starry eyed “fan”. I passionately and wholeheartedly believe in hope, not only in myself but more so in others. This year alone, I have seen strangers joining together and freely offering empathy and compassion to one another. I have personally seen selfless generous souls making contributions with no apparent benefit to themselves. I have seen people react sensibly in the face of diversity. I’ve seen the pure dedication and tremendous hard work of Raiyan’s therapists in everything they do. And I’m still overwhelmed with the amount of support I’ve received through this humble blog of mine.THAT’S why my enthusiasm for Obama cannot be completely and superficially construed as nothing more than a naïve and easily led fixation because I have learnt from personal experience to truly believe in the powers of hope along with hard work, determination and a pure heart (hati yang ikhlas).

Every day from now , I urge other parents to not stop working, not stop campaigning, not stop learning, and most importantly, not stop hoping. Hope is what helps us get through the tough times but with every sweat and tears that we put into our efforts we also get our shares of joy and appreciation. And from what we see with our very own eyes on every single day and especially on that momentous night of November 4th, indeed, hope CAN and DOES win.

Autistic/Has Autism-Does it really matter?

In one past post, a commenter actually accused me of not seeing Raiyan first before the autism because I call him “autistic” and not “with autism”. I was slightly taken aback by this accusation, especially because I have used the terms “autistic” and “with autism” interchangeably. In fact, didn’t she see my blog description “Heartwarming tales of a pweshes boy with autism in Brunei”?

Can you believe there are actual debates(on top of every other endless debate on autism) over the usage of these terms? Frankly my humble opinion on it is it makes no difference which one is used. What I hate though is when a parent judges another parent based on their choice of which term they use.

The reason why some people prefer not to say “autistic” is because it gives the impression that autism defines the child and that is ALL he or she is, whereas if you say a child “has autism” then it seems clearer (I guess..) that the child is his own person who happens to have autism as part of him.

You would know from reading my pweshes philosophy that I have always thought that autism is a part of Raiyan and at times is actually a large part of him. But I still do not think that Raiyan equals autism and nothing else. And it certainly doesn’t mean that if I call him autistic, my philosophy is any different. To me it is just a different use of language where “autistic” is an adjective and “with autism” makes the autism a noun. It means the same thing!

For example, when you use an adjective to describe others such as “she is bossy” or “he is creative” or even something not nice like “she is fat”, you are not defining that person to be ONLY smart or funny or fat right? And wouldn’t it be strange to call them “a girl with bossy qualities” or “a boy with creativity” or “a girl with a heavy weight?” Doesn’t that sound weird?

So please, if the next time anyone feels the urge to tell another parent off or judge them just because they use “autistic”, please give them the benefit of the doubt that most likely than not, it is simply because it’s easier and shorter to say.

And for others, who hear a child being described as “autistic”, give the child the benefit of the doubt that that’s only an adjective to be used of his or her character at times but it does not FULLY make up who he or she is.

Nobody likes to be defined by a label anyway because every human being, disabled or not, has their own unique qualities that contributes to this beautifully diverse God given world. The only label you should always call another by is actually really straightforward-their name!

Enough with the fighting!

I have read through many many blogs on autism since I've started Raiyan's. Initially, being trailed by insecurity, naivety and credulity, I was easily influenced by the varied opinions expressed by these bloggers, who mainly comprised of parents of autistic children and autistic adults.

I think it's quite natural for parents upon receiving the diagnosis (especialy in Brunei when denial against autism is still quite prevalent) to want to "cure" the child or rid him or her from whatever that is causing him to be different. Different not only from our own expectations of how he or she should be but also (however shameful it is to admit) from other people's perceptions of how your child should be.

So, we naturally sought whatever available therapies for Raiyan and grabbed whatever we could find. Of course Jeff and I have never stopped being thankful for having Kerri and Jo enter our lives. They not only have taught Raiyan the ABA way but they have completely and utterly done so with the constant belief that each and every aspect of the programme caters specifically to Raiyan's personality and being, and which always considers both his potentials and limitations. I know ABA in its most general terminology can sometimes be viewed as bad by some neurodiversity supporters because it is said that its objectives are to "normalise" the child and make them "indistinguishable" (even though those are often false dreams aspired by newly diagnosed autism parents..) and even worse are those accounts of the earliest Lovaas methods that use excessive force to the point of abuse on the child to be part of the therapy. Learning Ladders Blogspot has very effectively described the "kind" of ABA that we use and to add on that, all of us parents (and Kerri and Jo for that matter) do not employ or let alone, do not agree with the philosophy and techniques the type of ABA therapy that those negative views are placed on.

Anyway, back to the point of this post. After reading the many opposing opinions on autism, mainly surrounding the need to cure and how that is considered offensive to the neurodiversity group and also the more widespread one these days which is whether or not vaccines causes autism, my thoughts have probably leaped from one understanding to another as frequently as Raiyan's hyperactive need to constantly run from one end of the room to another.

Though at first I was appalled at the comments made by the ND group ridiculing us parents who wanted to "cure" our child, now I'm thinking perhaps I was too quick to place myself on the side of those who indeed yearns for their child to cured or recovered. This is because I have learnt that those on this side of the debate seek to one day have their child to not have autism anymore. After just a month or so after the diagnosis, I soon began to realise that this is not what I hope for at all. My main worry about the autism is how it is affecting Raiyan's communication. The other aspects of his autism, like his repetitive behaviours and reluctance to try new things, though we are trying to improve as much as we can for now, are actually tolerable and to us, and are a completely acceptable part of him (It's society that takes issue with them more). I think it's just a matter for us parents to control its timings and frequencies as opposed to eradicating them altogether (just like how typical children are disciplined and prevented from behaving a certain undesired way too). After understanding Raiyan more, I clearly see that him doing the things he does makes him so blissfully happy. And if the worst thing that happens from him hugging some random child is for others to regard him as strange then I don't mind so much that he does it. Rather, I would more think those persons are the ones with the problem!

One thing that puzzles me is this one overlap that seems to run its themes across all these autism mommy blogs and these are pictures and pictures of how happy the child is, regardless of which autism camp the mommies belong to. For those in the camp that wants to cure their child, pictures of their child going down the slide are usually elaborated with stories of how before the therapy, he wasn't able to even go near the playground and now LOOK! Another step towards recovery. What you would read under a similar picture in a neurodiversity mom blog would then be something along the lines of this is my autistic child and how happy he is going down the slide. Basically, they are more portrayed as being able to do that kind of thing anyway.

I didn't plan for this post to be a long one so I'm just going to abruptly cut it short here though there are many other thoughts going through my head now. It's just that I am really really getting tired of reading about all this in-fighting when to me it seems clear that all the parents want is to see their child happy. Maybe one side may think the other side is doing it the wrong way and in the end, may risk doing more damage to the child-but that is for them to find out themselves rather than being told or dictated on what to do.

Like me, I managed to slowly turn around... With a more open mind than before, I am beginning to really grasp now what the ND group is trying to say, despite all the hostilities and harsh words sometimes used. In turn, I have also discovered some unpleasant comments made by the side that wants to cure that I'm as equally appalled with them as how I was previously appalled with the neurodiversity group.

I don't actually promise that I'll stick with this opinion forever. My journey with Raiyan, insyaAllah, is only just beginning and I have a whole lifetime to look forward to discovering Raiyan, understanding Raiyan and also to learn more about autism. The thing is at the moment, I kinda need both sides to learn from as I really honestly feel there are pros to each side's story. I only wish I can continue learning without having to play witness to people being so nasty and hateful to each other.

Please don't believe everything you hear

Dear Parents,

I was recently alarmed to hear stories of opportunists falsely claiming themselves to be ABA consultants/therapists. ABA or applied behaviour analysis, which I am sure you know by now, is the type of therapy that our children at Learning Ladders, including Raiyan, employs. At the same time, I am not all that surprised since with the rising rates of autism, and with ABA having gained a credible reputation to be scientifically proven to help children with autism progress, naturally there will be those reckless few who would outwardly declare that they are qualified to draw up and implement such ABA programmes when they are absolutely not in the position to do so.

Perhaps some elements of ABA are sometimes practised; such as rewarding and reinforcing good behaviour, making the child look at you when you talk to him and where possible vice versa and making use of puzzles and flash cards. But I urge all parents out there, please do not think that this is the extent of ABA. I can safely say that this is DEFINITELY not the extent of what Raiyan has been following for the past 6 months as it vastly surpasses all that I have mentioned. Not only is the programme VERY VERY systematic in the chronological order of things being taught, drills are also carefully structured so as to keep the interest of the child and massive amounts of data, in terms of skills that are introduced, mastered, generalised and maintained are accurately recorded at EVERY therapy session. The resources used also change ALL the time (Raiyan has not an item more than once since he started therapy). And, each session must last AT LEAST 2 hours at a time.

That's as far as I know to share my experience with ABA through undergoing Raiyan's programme. Please, please I encourage parents to read in more detail what is required of an ABA consultant and therapist from this Learning Ladders post. Best of luck!

2 heads are better than 1-Part II

The Brunei Times ran an article on the Society again today, entitled "New Society Offers More Choices"briefly describing the main differences between Learning Ladders and the pioneer autism NGO in Brunei, SMARTER. I am personally not surprised that such an article was published shortly after our official launching because admittedly, this must be a query that goes through a lot of people's curious minds, especially since SMARTER has made such a large contribution to the cause in the Bruneian Community to this date through their countless fundraising activities and awareness campaigns (hence why does Brunei need another society to deal with autism?).

As explained by the article, the main difference between the two organisations is the type of therapy available for the children. Learning Ladders use ABA and SMARTER (quoting the President) use Independent Living Skills. First tip to parents: Google the 2 types of therapy and study what each type is all about.

For those who are not really in the know about autism spectrum disorder, there are many, many types of intervention strategies avaialable and specific to autism. To name a few, there are Applied Behavioural Analysis, Applied Verbal Behaviour, Eclectic Teaching Methods, TEACHH, Floortime, Speech Therapy, Music Therapy, Art Therapy, Sensory Integration Therapy, Occupational Therapy, PECS, Biomedical Intervention and many others. As you can see, parents are faced with many different options to choose from in finding what's the best method for their child. REMEMBER, autism is a spectrum so no one autistic child is similar from another so one can benefit from one type of therapy and another can benefit from another type.

I sincerely do not want to enter into a debate over this matter but simply to say that in our circumstances and in the circumstances of the other families of Learning Ladders, we have tried some other kinds of intervention but after not seeing any progress with the children, decide to seek something else. And Alhamdulillah, fortunately for us, we discovered ABA worked wonders for our children. [At the same time, we completely acknowledge the fact that it may also not work for other children].

Seeing the success with our own children, it is thus natural for us to want to share this discovery and let other parents in with the opportunity to try it if they are still seeking ways to improve their child.

Please, I appeal to all the curious minds out there, just try to understand the rationale behind the society to be JUST that. This is about the children. About providing the best chances for these children to flourish and live a fulfilling life. Let's leave all the politics to Clinton and Obama for now okay?;-)

Author's Note

Due to a sudden influx of negative accusations of me on a personal level that are completely irrelevant to the primary objective of this blog, I have chosen to not approve comments of such character, not because I cannot handle the criticism but it's just too heartbreaking to have such horrible words shared on the same page as the stories of my beautiful son.

This blog was mainly created to share Raiyan's stories, past, present and insyaAllah a better future so that we can give the message out to other autism parents that there is hope out there for their children. I admit that along the way, telling his story has required me to also share some factual events that have happened which has caused Raiyan to be where he is now. I completely apologise if persons that are affected by my sharing of these factual events feel like they have been unfairly criticized by me. Please believe me that it was never my intention to undermine you and your organisation and if you care to read my post entries more closely, I can safely say that you can see I tried very hard to be professional in all of the 5 (out of 42) posts where you and your organisation are mentioned. If you still think otherwise, then I duly invite you to highlight to me exactly where I have shown such lack of discreetness so that I know what exactly I need to work on.

As I said, this blog is about Raiyan's journey with autism and it is my dream that one day he is able to read it and look back and see how far he has come from. With that I seek your understanding as to why it is too important for me as his mother, to preserve the records of his journey in the most positive light and more importantly to not let it be tarnished by side discussions on patriotism and politics that have nothing to do with Raiyan's condition and progress.

It has greatly saddened me that this sudden influx of negative and irrelevant comments now runs the risk of diverting precious attention away from reading heartwarming stories of our Raiyan.

I still more than welcome comments but I request that even if it is on a negative point, please keep it on a professional level and most of all make sure they are constructive comments that will ultimately help Raiyan in his journey.

I am grateful to my dear sister for reminding me of essentially why I keep this blog and the fact that even though I do want to give everyone their fair chance to say something, I nevertheless am still in control as to what should be displayed in maintaining the basic principle of what this blog is about. I recommend you read her most eloquent ways in explaining and arguably to some, justifying, this need to do so at this post of hers.

Thank you and Wassalam.

Update: It has come to light (man sometimes I really am that slow!) that the attack towards me and Learning Ladders was not necessarily because I personally have provoked the issue in my posts and comments but more because I had allowed one provocative comment to pass through, specifically the comment made by EG M from Newcastle, which I have now deleted. I understand now how the comment have angered so many and I sincerely apologise for the momentary lapse of judgment on my part to still have published that post despite the negativity it was brewing up. To EG M, we really did appreciate some of the points made in your comment about the inadequacies that exist in Brunei when dealing with autism. Nevertheless I have to stay true to my point in not allowing extreme negativities in this blog about Raiyan and whilst admittedly you made some valid points worthy of further investigation by the appropriate authorities, I only wished you delivered them in a manner that didn't provoke so many and opened this floodgate of angry rants on irrelevant things that I really needed to put a stop to.

Raising Awareness v Anonymity

A very interesting debate I had in my comments box that I think it's worth for everyone to read if they haven't had the chance to...

Dr V said...

Firstly, I have to applaud you for being brave and honest about your son’s condition. Being a psychologist from Cardiff, I’ve met a lot of mothers like you. Most of them even suggested that autism is not unusual. I agree that you need to vent out your frustrations in order to cope with likelihood of depression and leveling how you really feel. Nevertheless, have you thoroughly considered the repercussion of your actions, which is remaining anonymous at least for the sake of your son.

After reading many of your posts, I would say this is a ‘classic bereavement and denial stage’ and there appears to be a lot of anger and pent up frustrations on your part especially having to deal with such huge diagnosis such as autism and limited resources in your country. Have you ever considered attending therapy yourself to help you cope better with the overwhelming situation. In my opinion, his anonymity is vital in his case, to protect him from future social prejudice and labeling, which could be fatal to your son’s personal progress in the future.

If nothing else, this should teach you patience with what you have no control on and cannot change.All the best to Raiyan.
February 26, 2008 11:27 AM

Pweshes Mama said...
Hi and thank you for your comment.

I am sorry to hear that after reading my posts, you find me to be a mother in classic bereavement and denial stage.

Yes, there are times I may sound frustrated but it has NEVER been because of my son's diagnosis. I'm not sure what your view is on autism, but like a lot of the mothers you have met, I do not view it as something "unusual" and to be shielded from. It is something that has rapidly increased in occurrence in recent years and without a known cause and cure, will only continue to increase. But unfortunately in my small country of Brunei (where almost everyone knows each other anyway), there is still much ignorance of it, whether it's from the public, the medical authorities and the education authorities which unfortunately leads to these autistic children being shunned, ignored and judged upon.

I would have thought that by proudly sharing stories of my son will help change the mindset of these ignorant people and help society to start viewing autistic children in a positive manner.

I cannot prevent social prejudice and labeling against my child in any case but at the very least what I can do is try and stop being labeled "autistic" as a bad thing.
February 26, 2008 12:54 PM

autismx2 said...

Dear Dr V,

As the mother of 2 autistic boys, I am proud to say that Pweshes Mama is very brave in writing about her experience as the mother of an autistic boy.

Have you ever been to Brunei? We are a tiny nation where "everybody knows everybody else!"

I am ashamed to say that our society has a very "closed" mindset. Any form of disability is to be "brushed under the carpet" and any disabled child or adult must be hidden away like a "dirty secret".

I am not a psychologist, just another mother who understands what she is going through.I have met mothers who are in "classic bereavment and denial". They do not and are not able to accept their children's condition and as a result their kids( we are talking about kids more than 7 yrs old) being kept at home! I have also met parents who have more than 1 autistic child who go out without bringing their kids out until peoiple actually forget that they have kids!

Pweshes Mama is actually accepting her son's condition and actually helping her son by using the limited resources we have here in Brunei and spending Thousands of dollars every month and all coming out of their own pockets and not even from insurance!!!( Again, AUTISM is not recognised here so insurance DO NOT cover any treatment for Autistic child here).

You as a psychologist should be helping to create MORE Awareness for Autism. Why hide it? Autism is fast rising.....a hidden epidemic.... it SHOULD NOT be HIDDEN anymore.It is people like you who should change your mindset into thinking about ANONYMITY OF AUTISM. Even here in Brunei now whomever I meet they have kids with some form of disability.

Should all these people just keep quite and hide the fact that their kids are disabled?And why should we hide it? Should a visually impaired person hide their blindness? Should a hearing impaired person hide their disability? Should a Downs' syndrome be kept hidden?Every parent should be proud of their children no matter what condition they have.

You should look up Dr Temple Grandin, Steven Spielberg and even Bill Gates. All these people are on the Autism Spectrum. Was their condition FATAL to their personal progress?

With knowledge and awareness comes understanding, acceptance and tolerance.

Keep your sympathies and ignorance to yourself!

We mums of autistic children who write of our experinces and of our autistic children in blogs are PROUD of our children.

Why shouldn't we when diagnosis proves that our kids are SMARTER than you and ten adults put together!!!!
February 26, 2008 5:40 PM

Tiwin said...

Dear Dr V,

Thank you for your comments. With the countless support my sister has been receiving from this blog, it's certainly interesting to read a different perspective on her actions.

I understand the point you are trying to make. Having witnessed everything my sister has been through with Raiyan recently, I never once saw her break down about it. Admittedly, I was worried about how she was handling it too. It IS a big deal to have your child diagnosed with autism, but she never showed any signs of bitterness, of resentment. Yes, she has shown frustration at the limited resources in Brunei, but which person in her position wouldn't? She never played the part of the victim, nor has she ever placed Raiyan as a victim. All she has been dedicated to doing, is making Raiyan better.

I suppose it must be hard to imagine how someone can stay strong and persevere throughout these challenges without it taking a toll on themselves emotionally. But that's my sister for you. She could have felt bad for herself for having a child with autism, but instead she found the positive side of the situation, and embraced the fact that she had been presented with an opportunity to be a better parent. Having Raiyan taught her to be more patient, taught her to be more hands on with her children, taught her to be more appreciative of what her children's achievements and much more.

I have watched her grow so much over the years and what I see now is an incredibly strong and selfless woman, who is completely in love with her son and is doing everything she can to ensure a bright future for him. Her wonderful husband is as equally dedicated as she is, and she has a good support system around her.

As for your belief that exposing Raiyan could potentially harm him, we are of the other school of thought, who believe that we are educating the public by putting his stories out there. Our mission is to change the perception of what children with autism are like.

Raiyan is a ridiculously adorable and lovable little boy, and I believe that having people know Raiyan, putting a face to the issue, makes it more personal to people. And people are more inclined to offer their support and get involved when it's personal. I don't believe this blog would get as much response, had there been no face to the stories.

So thank you for your concerns. But I hope what I've said has shown you that there are some people in this world who can still march on with their head held high, even though the tide seems to be against them. You may call it denial, but we call it hope.
February 26, 2008 8:27 PM

Nisa said...
Dear Dr V,

It's quite interesting the way you would make your diagnosis merely based on reading one's blog site without even having met the person.

I don't feel the need to further endorse Pweshes Mama, simply because she doesn't need it as she is, as I've said before, a very inspirational mother.If you've had the privilege of being a mother yourself, I'm sure you would realise that all mothers are prone to occasional breakdowns. So what should mothers do then in your professional opinion when this happens? It is silly to condemn a mother for expressing her feelings and coping so well with her autistic child.

So as far as Pweshes Mama having 'classic bereavement and denial', I would say that she can readily flick that off now as a logical fallacy made by a doctor - who made that diagnosis based on an illogical relationship. But hey, maybe you can diagnose me based on this post? Further strengthen your credibility, perhaps?

Regards,Nisa
February 26, 2008 9:44 PM

Anonymous said...

Dear,

I agreed with Dr V, as a psychologist myself from Australia, although i am not a child psychologist but i do have background on child psychology as well, i really think your son's anonymity is vital. Think of his future as now people know about him and this would have a bad impact on him. Apart from that, i think you are a brave mother and i must say you have done good. Do keep up the good work, but always remember to look after yourself as well.
February 28, 2008 10:02 PM

Pweshes Mama said...
Dear Anonymous,

As I've mentioned before (and had kindly been backed up by autismx2 and tiwin) I do not see any reason to hide my son simply because I do not view autism in any negative way.

That's why I have been wasting much of my precious time going in circles trying to think of the exact reason why Dr V and you are so adamant to not have people know about him because you think it will have a "bad" impact on him. Can you be more specific please? What kind of "social prejudice" are you talking about? and please, I am dying to know what kind of "bad impact" will he and his progress encounter?

To make things clear, I AM NOT making my son undergo therapy because I expect it will make his "autism" completely go away and turn him into a typical child one day. I am merely trying to help him as much as I can in the difficulties caused by the autism and to raise the chances of him being able to live independently in the future.

Nevertheless, he will ALWAYS have the autism, no matter where he goes and no matter who he meets and that is something I cannot and will not deny, nor will I let him deny it and I will most certainly not let others including those like you, deny it. He is who he is and I accept that autism is a big part of who he is. And I expect others to not only accept that but also understand it.

Not only can't I understand WHY I should hide his identity and the fact that he has autism but also for logical reasons, HOW am I supposed to?? so I don't tell who he is here and so when people first meet him, they MAY not know he is autistic. BUT I can bet that after just a few minutes of meeting him, they will still detect something different about him. Like when he doesn't look at the person when he says hello. Or when he is asked something he may not answer because he doesn't understand the question. Or when he is running from one end of the shop to another repeatedly and doesn't seem to at all tire from it. Or when he rejects someone giving him foods that he is not familiar with.. etc etc

Rather than have these people form their own "judgments" as to why his character may be a bit strange, that's WHY I would want them to KNOW that he has autism. It is important for people to know and understand that he is the way he is because of the autism and NOT because he is spoilt or strange or rude. THOSE are kind of social labeling that I do not want associated with my son because he is simply NOTHING like that. He is an absolutely delightful and amazing little boy who has given everyone who knows him nothing put pure joy and unconditional happiness. Yes I do admit to him being difficult and challenging sometmes but then again, which child isn't?

Furthermore, working on the difficulties is mainly to help HIM! It is NOT in any way just to benefit me or his caregivers and CERTAINLY it is not done so as to spare other people from having to "deal" with him, being a child with autism.

Autism is real, it is alive and without a known cause or cure, is only going to happen more and more. It is high time for people to not only LOOK at it instead of avoiding it and treating it as some kind of plague but more importantly, people really need to start learning and understanding the condition more and not only do I intend to do this through Raiyan and his stories but I shall do it in the most positive way possible as this accurately reflects my true feelings about autism anyway.

As autismx2 said, only through knowledge comes understanding, acceptance and tolerance. So please, Dr V, anonymous supporter of Dr V and if there are any other Dr V supporters out there, before you once again try to make me feel defeated in my quest to spread this knowledge and understanding,enlighten me as to why it is still important for Raiyan to stay hidden when there seems to be so many valid reasons for him to instead, stand up tall and be proud for who he is.
February 29, 2008 9:09 AM

autismx2 said...
Yay! Pweshes Mama.....Well said!!!!

A question to Dr V and "supporter"...do you have an autistic child(s)? Have you ever spend at least a whole day with an autistic child(s)? Have you really studied deeply into AUTISM and Other PDDs?

My 7 yr old autistic son looks very "normal", but he would go out in public or school with one leg of his pants rolled up high just because it is scratchy or slightly wet or stained. No amount of explaining, negotiations or bribery would make him roll down his pants. If I force it on him he would even take off his pants in public and walk around in his undies!

He would not care what anyone would think..... he would not even think that his behaviour would cause stares from other people.....but what is worse is when some passers by or schoolmate would actually say "Haha that child looks silly....so retarded!"

Now that is a labelling that I certainly do not want on my son....EVER!

He is a very high functioning kid who understands every word anyone says but due to his social impairment he would not be able to understand any emotional cues.And also because of this he gets constant bullying in school.

So should I just keep quiet about his "Autism" because I am afraid of the "SOCIAL REPERCUSSIONS" ORWhen I do talk to the school, should I try to keep it ANONYMOUS as to who the "strange child" is that I am telling them about?

Well what do we mothers of autists know.....we'll just listen to EXPERTS like YOU..... and sit back and watch while our children gets bullied, called freak/retarded/alien/stupid by IGNORANT (of AUTISM) people because we are AFRAID of exposing their condition for the sake of their future!!!!

So TELL ME what is their future like if ALL their lives IGNORANT people treat them this way?Think about it Oh! Ye "NORMAL" people!!!

March 1, 2008 9:59 AM

So what else can I along with autismx2, tiwin and nisa have to say?

To people like Dr V and this anonymous supporter, please try and understand our point of view first before you prematurely lay out your advice that you disguise as something constructive or caring.

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.