Do all parents with severe ASD children want a cure?

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Math Girl - how can you say you don't want an NT child? You only want a child that has an ASD because you feel you will better connect and help them? What about NT parents having a ton of trouble connecting and helping their ASD children?

I don't have personal experience with this, but from what I've observed locally, ABA is usually done in the home until age 3 (10-25 hr/wk is my impression), then the child goes to a special-needs preschool until kindergarten, either 3 or 6 hr/day. Then there may be insurance or regional-center funded speech, OT, social skills, and ABA appointments in the afternoon after school. The ABA might be in-home, but the others are definitely at the therapists' office.

Most seem desperate for more respite-care hours from regional center -- which is often as little as 4 hr/month.

I didn't say I would try to make my NT child more autistic, if I had one...

Also, that's very interesting about ABA therapy/services. I know the early intensive behaviour intervention (EIBI) here is 40 hours/week. I will ask around, I'm curious now. By the way, if anyone is interested, the services are offered at a bunch of child intervention centres under the Toronto Partnership for Autism Services (TPAS).

Edit: I just want to say I think parents should have the right to choose whether to have a child with autism or not. I think that if prenatal screening ever becomes possible for autism, it would be like with Down's syndrome - some parents will still keep their child even if they know that their child is going to have autism. So I am not totally against science of research, only AS LONG AS people with autism still remain properly accommodated in the society, not discriminated against or stigmatized, and not forced/pushed to take any cure. That way, there could still be an autistic community and all autism would clearly not be eliminated from the society, just controlled to an extent.

Edit 2: Anyway, I've gotten too absorbed in this thread and need to focus on studying for my exams now. I'm still reading the posts and will respond more properly to anything else after I finish my exams.

Last edited by MathGirl on 11 Apr 2014, 8:05 pm, edited 5 times in total.

mathgirl,
mine dont,they like how am today and are proud of how far have come along even though will be in high level care homes for life.

the whole cure issue of severe and profound autism is one of the reasons that stay away from autism forums which mainly have parents on as they have a very different view of autism and base their view on how they woud cope with our level of autism,of course they will see us as suffering when they;NTs use themselves as a yardstick for guessing what our lives are like.
with the right support,understanding, specialist, medical intervention and equipment/adaptions, we can have high quality of lives,used to live with two profoundly autistic adults who attended a mainstream UK college and both had jobs however am unable to access any mainstream colleges due to intelectual disability & severe challenging behavior and am a student at a special college which is only for people with severe or profound autism with ID and epilepsy.

some parents ignorantly choose not to believe am severely and lower functioning autistic purely because am able to write on a forum [though lack the capacity to do back-forth chat],they want to hold on to a view that their kids are screwed and they will always be in exactly the same state,yet we adapt and change to varying levels regardless of our mental capacity.

Are you studying for a degree, or just studying for youself?

its not that sort of college,the US definition of college means the UK definition of university.
the david lewis centre [old post here on it [ http://theresidentialautist.blogspot.co ... loser.html ]is a special college that works on improving the functioning, sheltered work skills and theraputic needs of very high complex needs children and adults-most of us are padded helmet wearers for example.

have got a young [pre teen] mental capacity and not even the special education courses at mainstream colleges were able to accomodate so am not doing academic courses and am doing a animal course which is for both sheltered work teaching purposes and therapy-they have everything from chickens to snakes,to rats to donkeys etc there.

Seems like something you'd like

My experience is this: I have come across parents who's kids are "mild" who want to eradicate all traces of autism and I have come across parents who's kids are "severe" who would not change them. I think there is a huge variety and mix out there and I think there a lot of underlying reasons that most people do not take the time to understand.

However, regarding your second question--and again, this is based on my experience--I have found that die hard curbies mostly only want to interact with other curbies. I have known women who started this journey the same time I did, before anyone really knew where they stood on the "curbie" "neurodiverse" spectrum. Opposites tend to fall away over time because there are deeply rooted underlying philosophies that are in conflict with one another. If I am to be completely honest, I think the very concept of accepting the autist exactly the way they are is threatening to many curbies, because it implies that they do not accept their children. Most parents cannot tolerate the thought of not accepting their children. So it is easiest to move far away from those that cause inner conflict. I suppose the opposite could be true, too. I have been told that I do not love my kids enough because I was not willing to "do everything possible" to "cure" them.

I have often wondered if my kids were more severely affected if I would still feel the same. When I was younger, I worked with kids with very severe autism and I am certain the thoughts that weighed heavy on their parents' hearts are not the same things that weigh heavy on mine. I think there is a huge difference between my daughter who is academically talented but has mild to moderate social deficits which result in frequent acting out at school and the boy I took care of who's hands and arms were scarred and body bruised due to SIB, who needed to wear a helmet all the time so that he didn't cause himself brain damage. For as much as I know it is not fair for me to judge the quality of his life because I do not have direct knowledge of how he felt about his life, I have to say the kid appeared to be in distress all the time. If he were my child, I don't know that I'd be able to embrace what hurts him. His pain would be my pain and it would probably be unbearable.

As a therapist, I think you will find plenty of parents who need help who will appreciate your POV. I suggest you focus on those parents and in investing yourself in helping those kids. One of the reasons I left psych is because I had a hard time embracing the concept that you can't save everyone. If you can't focus on those you can help and move past the ones you can't, you will probably find yourself to be too burnt out and raw to help anyone, which I think will be a shame because I think the world needs more autism-friendly professionals.

That's called eugenics.

No, it's called parents' -- women's, mostly -- having a realistic idea of what they and their families can handle on a long-term basis. Had a trisomy come up on my amnio, I'd have had an abortion. A sick husband and a Downs child -- far too much for me, emotionally, physically, financially, and in terms of available help.

Cure?

What til you have a kid.

I would lose my mind with worry. Not in the right now, but the later. What if you can't advocate for your non verbal kid because of your own health issues? What if your kid is 6 ft tall, non verbal and aggressive? What the hell will happen to him/her if they aren't the "easy" type, and you die? Siblings are no guarantee. Unless you have a deep wallet and a trust fund, that kid will be potential prey for every crap group home operator/nursing home.

So yeah, if I had a nonverbal, low functioning child, I'd be praying like hell that something might help, so he/she could have a fighting chance in this POS world. So they wouldn't be used and abused for their crummy $500/month SSI check. That they wouldn't be medicated into oblivion, and tied into a Geri-chair for hours on end, because they are a pain in the ass and a runner risk.

It isn't that I would wanted them "normal". I'd wanted it where if I'm not there, the kid wouldn't be warehoused and abused. No one wants their kids to become prey for the grifters.

If cure=a little more functionality, why the hell not?

Okay, I will make one more post. I agree, it is not eugenics, and here's why. We already know that there is no one single gene with autism. If genetics research comes to anything, they will probably find gene combinations for different subtypes of autism. Hopefully, they will find the combination that produces the disruptive behaviour kind of autism. Then, through prenatal testing, a parent will know that there is a risk for severe disruptive behaviours and have the choice not to have the child. Some parents cannot handle it, financially, health-wise, or due to other circumstances, so this is done with the goal of protecting the parents. It is not done with the goal of eliminating autism from the gene pool or from society, and it is not putting restrictions on the reproduction of people with autism. It is simply giving a choice.

YippySkippy, if you have a better solution to this dilemma, I would love to hear it.

I also find this position strangely disturbing. I wouldn't go so far as to call it eugenics, though I guess it's pretty close. That statistic about 90% of people who screen positively for down syndrome decide to have an abortion has always disturbed me: I guess because I know and appreciate many people with DS the same as the OP with autism. Then again there are disorders like Lesch-Nyhan where I completely understand that position (I wouldn't wish that disorder on my worst enemies). I suppose there is a gray area and a subjective question of which level of disability is tolerable and allows for a life worth living. At one extreme it's no abortions at all or abortions to avoid those disorders that result in excruciating pain and early death, at the other end, it's aborting a child because of gender preferences (as is common in certain countries), or some trivial cosmetic preference (which I imagine most people would consider monstrous - at least for now). Autism is in the middle there, and depending on the person's perspective it can fall closer to one end or the other.

I imagine it must be very painful to people with ASDs to realize that there are people out there who would judge their lives as being "not worth living" or "not worth raising" simply due to their diagnosis.

That's why I would agree to this only if we continue providing services and accommodations for people with autism and if we, as a society, continue working on promoting acceptance and eliminating stigma. I see abortion as a last resort for parents who truly could not handle a child like this.

Ok- I have read through posts and may have missed some things or repeating others. But I do not believe autism can be cured, as in 'no more'. I haven't done much research on it, but seems to be genetic. When my boyfriend & I were expecting, we knew there was a chance he would have autism as my boyfriend has Asperger's. Honestly, I had no idea what I was getting into or how different it would be. I guess it's kind of 'normal' in a way, since he is my one and only. He is enough for me to handle.

Anyway- I think there is potential for him and think that he could have some hidden talent or something he will excel in. Of course, I would like him to have skills to be more independent, communicate, and be respectful to other people. I'm kind of a dabbler in things. There really isn't a particular thing that interests me. Maybe I'm naïve or uneducated in matters about autism but I think there's something autistic people really excel in. I think about Bill Gates (who has Asperger's and is successful). They seem to able to hold an interest in something and have special skills. That's why I could have gone either way with having an autistic child or not. I don't want to change who he is-- just work on trying to help him be the best person he can be.

Sometimes my son drives me crazy, but I love him. (And note that I may just be rambling..)

http://en.wikipedia.org/wiki/Eugenics

Call it what you want, justify it however you want the process proposed of getting there is a form of eugenics. Its hard to comment on the rest since its all hypothetical until the genetics are found and proven, if they exist at all which they probably do however for some even that is still a debate.