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.