Do all parents with severe ASD children want a cure?

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Outside of this board, I recently read a quote from the parent of a severely autistic, non-verbal child, as to the effect of "that if my child could function like XXXX (someone with Aspergers), I would consider him cured."

They aren't talking about changing the brain structure, they are talking about having a child that can communicate and function in this world. That is all they want. To them, that is "cure."

It is easy for us to say, "accept that child as he is," but we aren't the ones watching the child grow in frustration at a world he does not understand or know how to interact with. We aren't the ones watching someone we love scream in pain from a simple noise. We aren't the ones who are still changing diapers on a child bigger and stronger than we are.

If your child cannot see, you give him glasses. In the case of dysgraphia (which my son also has), we teach you how to type. But what do you do with a child that is locked inside his shell all day every day and that will start crying and screaming for some reason you cannot identify? How do you "fix" the problem for him?

No one gets upset at the idea that there should be a cure for polio, a disease that can destroy your ability to be your best self. And while you and I know autism is not a disease, to these parents it is keeping their children from being their best selves.

I think that is where those parents are coming from. What I'd really like is a new word, one that doesn't suggest the all or nothing idea that the word "cure" does. One that doesn't suggest changing the essence of who someone is but, instead, talks about fixing their most disabling difficulties.

To those looking for a new subforum for classic autism:

Since I still have access, I decided to check around a bit and, yes, Alex is currently busy elsewhere. I think I would wait a few months and then check in with an active moderator. But be aware there is a limit to how much any moderator can do, and they are all volunteers. Dealing with the administrative side of this site can make one want to pull their hair out (hence, my happy and permanent retirement from moderating; not to discourage anyone else who may someday get asked, doing your part for a forum you value is a good thing, but once I finished what I felt was my "turn," I was done.)

When I started posting here I was very much supportive of a separate sub-forum for autism as I initially found WP to be too "Aspie" centric. I've subsequently changed my views since both parents and people on the spectrum can learn a lot from each other wherever we ourselves are on the spectrum or our kids.

Secondly Alex has the right idea that as a cyber-community we should i) learn from each other ii) share our individual experiences and iii) represent a united front in terms of advocacy

Having said that, new members need to orientate themselves with the forum threads to post questions that are relevant to their predicament. For instance parents of non-verbal kids. I've seen a number of parents posting in the parents section of WP in relation to their kid not speaking getting frustrated nobody is answering their questions?

agreed with that,its why am still using WP as there woudnt be any direct representation on here of LFA otherwise and we woud have our wants and viewss made for us.

have often found though that its a lot of aspies and borderline spectrumers who insist on calling it a HF or aspie community as oposed to a ASD community, we need all sides of the spectrum to accomodate and advocate for each other-not just expect those of us with non aspergan forms of autism or parents of us to put up with being isolated from the spectrum.

polio is a disease,not a state of mind we are born with.

am fed up at the one size fits all assumption that those of us with LFA need a cure,not fed up of the idea of a cure, an outsiders view of LFA doesnt mean it correctly fits with our views.

our impairments are seen in a negative light more by carers/parents/support staff than ourselves as we experience autism very differntly to our parents.
we can have great lives with the right support and plans in place;it isnt up to anyone else to say we arent living upto our 'best selves'-for one thing we were never any different so how can we not be our best selves? we arent neurotypicals turned autistic,what our parents wanted and what we turned out to be are two different things.

as have said many times before in topics like this,am at peace with self and dont need curing and having lived with hundreds of other LFAs for the past decade am aware of how it differs for each person, a lot of people think acceptance and enjoying things in life must mean someone has it easy, when it is anything but that for self.

Hi KOR,

I've seen quite a shift though here on WP in the last couple of years. The "aspie-centricism" is nowhere as bad now as it was 2-3 years ago. Some of the remaining ignorance is probably more due to lack of exposure to people on the spectrum rather than individual prejudice. Having said that there are even a few veterans on WP who still think that if you are capable of articulate posts on WP then you must automatically be an Aspie or NT.

Secondly the labeling of people into convenient DSM or ICD pigeon holes is masqueraded as scientific. Add to diagnostic language the use of common labels such as HFA or LFA it gets confusing. For instance with the lack of scientific credibility for the Apsergers diagnosis it would appear the term HFA has become a proxy for those "aspies" wanting to distinguish themselves from others on the ASD spectrum but maintain their status (I assume most former Aspies still don't want to be lumped with ASD folk with stronger impairment)? ironically I've had to change my daughter's pigeonhole of HFA to autistic to maintain her different identity from the aspies.

However, I am sensitive to the various issues that impact on parents and kids with higher functioning forms of autism. In particular the higher risk of depression and suicide. My daughter is now 9 but she couldn't care less that kids in her class or in the playground ignore her. She's a happy child being on her own.

In contrast many Aspie kids have huge problems with social anxiety and wanting to be accepted by mainstream NTs. Some succeed but judging from posts in WP most wish they could have more friends or find a life partner or a better job. I guess understanding that loneliness and associated problems with depression mean I am much less severe on silly ignorant posts made by self proclaimed Aspie supremacists. Our individual issues may be different but one fo the reasons we are all here on WP is to either seek support or for somebody (pretty much anybody) to listen to us.

Appreciate the input here KOR, again I find your point of view very helpful and illuminating.

I second that. Our totally NV boy is really quite happy. In fact happiest with a simple straw in his hand running up and down in our yard spinning it in his hand. Whereas our friends kid who is classic Aspie, first said he wanted to kill himself from age eight because of his "bad brain".

My child is not severely affected but to provide, from my own experiences and from my discussions with other parents, another perspective...

As frustrating and complicated as it is for an ASD child, it is just somewhat less frustrating and complicated for a parent trying to raise an ASD child in many ways. The wrong planet idea goes both ways. If an ASD child feels like they are an alien on earth, the parent can feel like they are raising an alien child. As long and hard a process it is for an ASD child to learn somethings it is also a difficult process for the parent to help their child. For some parents a cure means a lessening of frustration, complications, and difficulty for both child and to be honest parent, for others it might also mean that they want the experiences for them and their child they imagined having before the child was born.

I can relate to this big time. I am on the spectrum and I STILL don't get my child. We are aliens from different planets! I don't want a cure... I need a translator and a cultural ambassador.