Do all parents with severe ASD children want a cure?

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Simple question... do all parents who have a child with severe autism want a cure for their child?

I was arguing with some parents online and one of them said "to say you would not want them to be cured of this (if it was possible) is about the most horrible thing a parent could hear".

If that is true, then, as a future therapist, I'm scared

I think the issue is that if you have a child who is very vulnerable in society, it is natural to worry. It is also natural to want the obstacles to go away. As much as the curebie positions bother me, I understand their positions to a point. They want to communicate with their child, and they want their child to function. They are overworked, overstressed and many are not going to want to get into the abstract theoreticals of the discussion. Some parents (not the ones that post here) sad to say, cannot see any positives because of communication and behavioral issues that make it hard to get to know their child.

If you gave them a choice between their child as is, a milder autistic version or a completely NT child, they are likely to choose NT. Many of them (b.c of various misinforming entities) do not even believe HFA, AS or milder autism exists other than to "steal" resources from their kids. They see it as purely a disability and analogous to asking them if they want a severely sick child, a more mildly sick child or a well child.

I have learned more about -myself- in the last 8 years of my son's life, (especially the four after his diagnosis) than I had in the previous decades. I would not want to change who my child is at his root. I wish it were easier to teach him the things he has to learn to function in society. I wish society were kinder. I wish a lot of things. I don't wish he were NT. I don't know that we qualify under your definition of severe. We have people who post here with kids with a variety of skill set combinations. They all show love for their children. I don't know what other parents would choose.

I think part of the problem is that the question implies either/or -- either fully "normal" or exactly as severely impacted as the child is now. If instead you asked, "Would you like to have medicine or therapy that would enable your child to communicate and feel more comfortable in the world, even if they never became fully "normal"?" Would you really fault them for saying yes?

I understand this, too. But the question is, would they welcome someone who accepts, respects, and appreciates their child, autism included, or would they only want to deal with people who agree that their child is in need of a cure?

The parents I've been talking to have been accusing me of being "selfish" because I said I would end my life if everyone was cured. I said this because I find the most fulfillment in spending time with people who have autism and if that were to disappear, my life wouldn't have much substance or meaning to it anymore. However, I also see it as selfish for them to want to change their child just because *they* can't connect with their child.

Yeah, I'm very aware that parents have this attitude toward people with "milder" autism, so I'm defining "severe" from their standpoint. Severe would probably be defined by them as nonverbal/only slightly verbal, with strong and pervasive self-injurious behaviours and sensory sensitivities, inability to do basic self-care activities, with all of these traits combined in one child. I don't know why it's so hard to grasp how these traits can occur and do occur on a continuum, but maybe that's just me.

Right, that's why I have problems with the notion of "cure" - it's a radical notion implying that all autism-related ways of being and behaving need to be removed. I support therapy that enables the child to function better in the world, obviously (I want to be an ABA therapist). But I don't support removing autism from people and the society altogether, which is what the curebie people are advocating.

EDIT: I would like to understand their point of view and would really appreciate more feedback on this; especially the "selfish" part really baffles me. Thank you for your responses so far!

They think it is selfish b/c in their minds you would object to getting rid of a "terrible disease" just so you can have people to chat with. They do not understand it is not a terrible disease. I don't think that is a difference you can bridge. It is a fundamentally different way of looking at things.

If their perspective is "extinguish, extinguish, extinguish," then I don't know if those are the clients for you. You could try to change their minds, but if you come across as too "militant" then you would fail to persuade them. You would need to get them to recognize the pluses in their child first before letting them know which ones are positive autistic traits.





We have discussed recently how the continuum goes up through the NT part of the spectrum, too. By this I mean that there are people who would never in a million years be diagnosed with AU or even be described as BAP, who have maybe one very mild trait.

Clinicians draw a line based on criteria, which may have a logical basis but is somewhat arbitrary, just the same. These particular parents draw a very sharp line, closer in to the spectrum. So they might include kids that are non-verbal but not self-injurious,, but maybe that is as far as they go. (I don't know just how severe you have to be to be in their autism club---and when someone gets categorized as "recovered." I do not lurk on those kinds of resources)

I don't think you would be any more happy dealing with those kinds of parents if they were militant about it, than they would be with you. If they are open to new ways of thinking, then it could work.

I have noticed the competition with parents about ASDs. To them AS is nothing. They act like severe autism is worse and need more help and the milder one should be ignored because they can talk right and tell people what they want and tell what is bothering them and what goes on at school. But even HFA and AS kids don't always tell their parents what is going on at school or may not like talking about their days all they may want to talk about is their interests, and they also have troubles expressing their feelings.

I think as a parent you can be thankful you don't have this or that issue with your ASD child like other parents do or be thankful your kid isn't as severe as the other child or be thankful your ASD child doesn't do this the other ASD kid does. It's the same thing with NT kids too. I sometimes read stuff online kids do and am so glad my son hasn't done that or doesn't do that. Look at s**t My Kids Ruined blog. I have my own s**t My kid Ruined lol. The stuff I see on that website is worse than what my own has done.

A lot of people think suicide is a selfish act. Is it possible they were referring to that?

I'm not actually quite sure what the were referring to because there were several ideas in what I said, but I think what ASDmommyASDkid said is correct. maybe there was a little bit of this, too.

I just need some time to process this information now - thank you all for your ideas so far

P.S. I never told these parents that I'm on the spectrum; I actually rarely disclose around parents because of what was mentioned above about them drawing the "spectrum line". I'll leave it up to them to see or not to see ASD in me.

I should say when parents say "cure" what they mean is treatment, therapy, getting their kids help so they can learn to talk and all and be successful when they grow up. That is what they want with their kids. All parents want their kids to grow up and live a normal life and be independent so they are going to try and get them help. But they use the wrong word is all because they do think it's a cure, some people even think Temple Grandin is cured because she can talk and drive and is a college professor and has a science degree in animals and she travels for speeches. She is successful and is living her normal life and isn't in some care home so they call it a cure she has. Even in the movie she said at the end she isn't cured when someone asked her how she got cured.

So when people talk about a cure to autism, what they mean is treatment for it. I had to be on the Autism Speaks forum to learn what they meant by cure and they were basically talking about therapies and treatments and they were calling themselves curbies for it These parents do love their children and want what's best for them. They tend to see autism separate from their child. They act like autism and their child are two different persons like autism is something that is stuck inside them making them the way they are and their kid is a prisoner to it and it makes them do things. Even some of them wrote how their own autistic child hates autism and what it does to them. I assume their kid probably expressed this to them through writing or something or some of them do talk and they told them this with their own words from their mouth.

I know this is true because I used to do it myself. When I said "cure" I really meant "improvement in functionality". I thought people (here at WP) who were against a cure were against any improvements in functionality. The poster who spelled it out for me most helpfully was Callista- she really sorted the difference between cure and improvement. But it is possible and even likely that some of the parents who say "cure" actually mean it as League Girl says. So if you say you are against a cure they will interpret that as against improvement and be very mistrustful of you as a therapist. Who would want a therapist who is against the child ever improving? That isn't your stand, of course, but out in the wider world, "cure" and "improvement" have become mixed together in meaning in precisely the way League Girl describes.

This would set off red flags for me if I was looking to entrust someone with my kid and they started talking about committing suicide. I'd think you were at best unprofessional to be saying that and at worst unstable, either way it would be a deal breaker. I understand you were using emotional language and talking in hypotheticals but it really would be inappropriate to say to a potential employer.

Okay, I can give you the context in which I said this... it was basically in a local autism-related Facebook group. I wouldn't say this in an employment situation for sure. I felt it was kind of a similar thing to say to what that lady with her child with autism said in the Autism Speaks video. I am a very emotional person and sometimes I do want to make a strong statement - the "cure" is probably not going to happen, anyway. I'm also not going to be getting any new jobs anytime soon, it looks like, so hopefully these people will forget my name and I'll just be a random person on Facebook to them. I just have strong feelings about this matter and felt like my honest thoughts needed to be said.

I find it very surprising that people use the word "cure" to mean "improvement". I don't think it's logical to see them as equal because, for instance, I have seen a person's diagnosis change from "classic autism" to "PDD-NOS" or "Asperger's" and that doesn't mean they were "cured", although that person clearly did develop and become more functional hence the drop in the number of clinically impairing characteristics.

I used to see autism as something separate from the person, as well. But then I went through intense 2-year brainwashing and now I can't think differently anymore; now, I see autism as part of a person's identity. I don't know if that's for better or for worse anymore. That way of thinking is pretty inherent in me now.

The reason I joined Wrong Planet was because I liked how positive this place seems to be and I am tired of the negative attitudes people have... but I don't believe autism is purely wonderful. I do think it's a disability. If that makes me a horrible person, then I'm a horrible person.

Personally I don't believe autism can be cured anyway and I definitely do not think it is caused by vaccines, so I think all the money spent of searching for a cure (*ahem* Autism Speaks *ahem*) is a waste. But I wish that there were more effective (and affordable) methods of dealing with the worst things associated with autism. I think if I could wave a magic wand and "get rid of autism", my kids would be totally different people, which would be sad.

Personally, I would be happy if the most challenging behaviours could be altered. I have two autistic kids. My older one is severe severe and my younger one is still pretty severe but is higher functioning. My younger one can do some academic work (a little bit of math and he knew how to read magically when he was 2 although he doesn't use language to communicate- which is one of life's greatest mysteries) and he does talk but 99% of it is random repeated phrases said over and over for hours, not used to communicate. My older one can't do any academic work and does not speak at all. Anyway, he's "higher-functioning" but he is WAY more challenging.

My older son is non-verbal and he's very hard to interact with, but he's pretty mellow. He doesn't throw himself on the floor in a fit of hysterics because his hot cereal wasn't ready fast enough or because there was a detour on our route to school, and he doesn't smear poo all over the walls or wake up at 1am and run around the house throwing chairs and books and plant pots and all the while trying to escape from the house and/or pour laundry detergent over his head. He doesn't constantly try to escape from me and run into the on-coming traffic. My younger son, however, does do those things. My younger son has serious behavioural problems. Nobody has a clue what to do. He doesn't sit in a chair (only under it), he refuses to wear shoes, he throw his shoes, he takes off his clothes, he gets into "exit-seeking mode" where he just constantly tries to escape, etc.

I'm extremely over-tired and sometimes I just don't want to deal with it. I don't think that behaviour IS my kid though. It's a reaction or something but it's not his "personality". So I don't mind saying that I wish he would sleep more than 4 hours per night. I wish he wouldn't smear poo or pour laundry detergent over his head. Etc. The thought of this being my life FOREVER is very depressing sometimes. And I do think it's selfish of you to want us to deal with this forever just so you can have an hour of fun... Yeah that's pretty selfish. I don't think my son is having the time of his life when he screams for 4 hours straight either, ya know...

Sorry for being so long-winded. I think I'd be happy if someone could alter the challenging behaviour even if my child was still "autistic". But it is really hard and I don't think you can really understand unless you live with a severely autistic child 24/7. Also I am aware that on Wrong Planet this is probably the "wrong" opinion to have but it is my opinion nonetheless. I try to be positive whenever possible though.

I understand the spirit that you were going for with that paragraph about ASDs being critical to your happiness. I see that what you were trying to say is that you enjoy living in a world with neurodiversity, and that it's good to have people in this world with varying perspectives.

It's important to understand that for many parents of children with much more severe problems (but the same label), autism represents a barrier to any kind of reasonable quality of life for the person with the ASD, as well as their family. For them "cure" may be synonymous with relief of some sort. Wishing against that would be seen as needlessly cruel. Yet, when you talk about "high functioning" people, "cure" means replacing their personality with something else. This breaks down to an unfortunately important semantic argument - when you talk about autism, it means very different things to different people. Likewise, when you talk about a "cure" it can also mean very different things, for one family it means no more getting bit, or driving to the ER because their child has injured their head by banging it against a wall, while for others it means non-acceptance.

When you talk about this from the position of therapist, there is an additional layer. I make my living off of people with ASDs, so if autism were "cured" I could conceivably be out of a job. Personally, I am constantly trying to work myself out of a job with each client. I want to make myself unnecessary in each of their lives, so I can feel successful and move on to another client. If there were a "cure", I'd pivot and find another way to help people - and I know that's probably your perspective too. From the perspective of a parent, it may seem like financial self interest for a therapist to say "I don't want autism to be cured." To them it may sound the same as a pharmaceutical representative who doesn't want a disease to be cured, so they can keep selling treatment pills (i.e. monstrously selfish).

So I do understand your perspective, and I see it as one of empathy for people who have ASDs, and an appreciation for their unique perspectives and gifts, but I would advise you not to voice that opinion in certain circles. It sounds right coming from the mouth of someone with an ASD as a political and cultural stance. From someone presumed to be NT who works in the field, it sounds monstrously selfish. If you happen to wear both hats (have an ASD and work in the field), then just make sure you've got them both on when you make that argument, or you're going to offend some people.

WelcometoHolland,

I don't think that is out of line at all. I don't think parents of NTs love everything their kids do 24/7. In fact I know they don't. It would be unreasonable to hold us (parents of autistic kids) to a higher standard.

My kid has some abilities that if you don't understand autism, look like magic or something. I can appreciate those things at the same time that I wish he could do schoolwork that is "boring" without complaining and dawdling.

There is middle ground.

I understand, and I agree. It is a disability and there are aspects of it that can be very distressing. Not all of what is called “autism” is distressing, though, clearly only certain aspects or certain types of presentation are. The causes of these behavioural problems need to be examined and these behaviours do need to be modified into more appropriate ones. However, that is not “curing” the way I would define “cure”. I don't know if it's just my literal mind or what.

Yes, I can definitely see why this would be tiring and why you would just want these problems to stop; especially since the child just came to you this way unexpectedly. I know I am still really young and haven't had as much experiences with more severe kids as I wanted to... but I do want to spend more than just an hour with someone like this. I do want to experience parenting a child like this. Maybe that will change my way of thinking about everything, but I honestly do. I know why, but I am not sure how to explain it. I just do. And if that makes me seem crazy to you, then be it.

I've thought I might be perceived this way, too. The thing is, I chose to go down this route in my life because I do want to be surrounded by people on the spectrum as much as possible so it just seemed like the most logical thing to do. Of course I do want to make sure I make a living and have stability in my life. But if I had some other source of money for the rest of my life, I would love to work for no pay. I often feel horrible getting paid, actually, even though I know that I technically did work for it.

I don't disclose because I don't want parents to think that I'm a “typical pseudo-autistic self-advocate” and try to take my voice away. I don't exactly identify with the radical neurodiversity community because of my stance on ABA/early intervention, and I clearly don't identify with the other extreme of curing everyone of their autism. Also, if I were NT and in the field as a professional, there are still other things I could do if autism were cured. It's not a be-all end-all for any well-educated, experienced person in the field – they could work with other disability populations instead. I can, too, except that I don't really feel as comfortable doing so as I do working with people with autism.

*sigh* This is so tricky. Thank you for pointing these things out to me.