Do all parents with severe ASD children want a cure?

Post Reply New Topic

Oh, and also... whatever the child does, it is ultimately managed by the brain. Autism, any form of autism, *is* a difference in brain wiring. If you change behaviours, you are also effectively changing the brain (behaviour therapies do change the brain to an extent). I can't see how you can separate the autism from the child if it's all essentially done by the brain. Of course, not the entire brain is affected. There are times when the child may act more normal and it would seem like that's the true personality of the child, but that is also initiated by the brain, just like the abnormal or distuptive behaviours are.

I haven't read all of the thread, so this comment may be misplaced, but you have to stop letting the word "cure" get to you. They don't mean it in the same way you think they do. They don't want to change who their child is, but they DO want a child who can communicate and someday be self-sufficient. As a therapist, you will have to always first figure out what someone means when they use certain terms, without jumping to conclusions. You need to get fully inside their viewpoint before going to the next step.

What we think of here as the cure-a-be world uses a whole different set of words than we do. But if you really let people talk and you listen carefully, they usually want the same things we do. Just they are tired and worried and they've picked up the culture of their group. You have to handle that gently, and not with confrontation. IMO.

I can't imagine that any prospective parent would say they hope for a child that will be dependent either on them or the government their whole life, but that doesn't mean they can't come to accept it, and that does not mean they will love the child less. Its just that it is not the job we instinctively signed up to do. We're supposed to be perpetuating the species, that is the instinct behind it all. Helping society grow and flourish and all that; raising kids that will have kids. Accepting a different answer is a process that can take a lifetime. People may not always even realize why they are having a difficult time because all this is instinct, its programmed into us. We don't know why we want it so bad. You have to be patient with people, help them see with different eyes.

I don't think anyone is trying to change how the brains of their children are wired. But they do want children who can fit in, since we're also programmed to think of that as important to happiness in life. Most families I know seem to be working for the happy medium: kids who know how to fake it when they have to, but are still their wonderful little selves when they get home. I wouldn't want my son replaced with a different one, but I am very glad he no longer needs an IEP and has learned to interact with the NT world.

I think there's a way to get your point across without offending, or giving away your own ASD status - maybe give the parents a bit of hope. Let me take a stab at it here (other parents please let me know if this would work for you):

"It must be so difficult to have such a hard time connecting with the world. I really wouldn't wish those difficulties on anyone. Yet at the same time, I see some amazing things in the people that I know on the spectrum, and I can't imagine a world without that. I wish these kids didn't have to suffer the way they do, and I'm all for things that can help them overcome their difficulties, but I can't imagine a world without their unique perspectives and abilities. So I guess when I hear the word "cure", I worry that it means erasing both what's difficult and what's special and amazing about these kids."

That would work for me, but not die hard curebies. This part here would still get her in trouble, I think:



There are parents who do not see anything amazing in their autistic kids at all. Even some who do, will not want any of the positivity associated with autism.

Emile, being out in the trenches, you would have a better notion about what percentage of parents are like that.. I am hoping it is not too a high a percentage and the OP can just not deal with those kinds of parents (unless she wants to take on that very hard road of trying to persuade them differently.)

Last edited by ASDMommyASDKid on 10 Apr 2014, 9:45 pm, edited 1 time in total.

It seems to me that this might be one of those circumstances in which situational perspective is so important and so different that there is effectively an uncrossable gulf, here. Those parents are looking at these issues through a lens that means they are incapable of seeing things as you do. And you don't and can't see things as they do. My feeling is that it's often better just not to say anything in those cases.

Trying to assert your position to people who cannot hear it just creates hostility and misunderstanding. Better to let it go.

Last edited by Adamantium on 11 Apr 2014, 8:53 am, edited 1 time in total.

I think you're right about that cure line - it gets to the heart of that divide between the "curebies" as you call them and the neurodiversity movement.

It's relatively rare that I run into someone who is die-hard about this stuff, except at conferences. I see people using GFCF, or chelation, or HBOT in addition to behavioral therapies. For most people, when they try these treatments it seems like the logic driving them is "try everything that may help, hopefully something will stick." rather than "this will definitely cure my child." I don't often discuss those issues with them, but I think the true fanatics put all their stock in those and don't have much time for behavior therapists.

I don't have as strong a personal stance in these politics so I take a pragmatic approach and try not to offend. I think I have the best chance of changing people's minds through demonstrating improvements. I do think that once parents reach some sort of acceptable level of functioning (i.e. no physical aggression, and some basic life skills), they tend to lean more towards the OP's position.

I do think you're right that arguing against the idea of "cure" with a fanatic is not going to end well, and if you're trying to have a professional relationship with them, it may harm that relationship. I think the same would probably be true with a parent who is in crisis over severe problem behaviors. Again, for them anything is better than their current situation, and arguing against that position is absurd. If you can get control of the problem behavior and show them some hope, this situation can change, and then such a political discussion may be possible.

I definitely don't think these discussions are necessary in therapy, and so should usually be avoided, but since the OP seemed passionate about it, I thought I'd make an attempt at giving a palatable way to express that. Still, it's probably best to leave it unsaid, or do it on a case-by-case basis. I do agree with your goal of trying to instill in some parents a basic respect and appreciation for their child (not just a desire to change them).

Mathgirl, I think you have to look at some of this from the parent's perspective.

There's more to accepting autism than deciding that this is simply a way of being and a person's self. The parents are responsible for getting those children through most moments of the day, and responsible for supervising the people who take on the rest of the child's day. It can be physically dangerous; it's often financially ruinous; it can be psychologically destructive to siblings; and it's profoundly, profoundly exhausting and alienating. I've seen several parents go through it, and they age much faster than the rest of us do. I just checked in on Kristina Chew's blog a few days ago, after forgetting about it for a year or so -- holy crap, she looks like she got run over by a Greyhound bus. But that's the usual look among parents of severely autistic kids, as far as I've seen.

Most parents will spend a couple of decades raising children, launch the kids, be there to steady the kids now and then and maybe help out during rough patches, but by and large they get to recover from childrearing after 20ish years. They get their lives back, themselves back. They get to rest.

Parents of severely autistic kids won't have this, ever. This is the rest of their lives, and their other children's lives. They'll be working themselves, and worrying themselves, to the limit for their whole lives. I know a guy in his 40s, lives semi-independently, still needs help all the time. Folks are old. Dad's not retiring. Where else will the money come from? And that's not severe autism, that's just ordinary AS. Someday his folks will be gone...which of the sibs will become responsible, and for how long? It's not trivial, they've got their own lives, own children.

So the parents worry for themselves, and they worry about their marriages --it's a huge strain on a marriage -- and about their other children, and they worry most of all about what will become of the severely autistic children. They know perfectly well that saints don't come out of the woodwork and put in that much work on behalf of their kids, and what will happen when those kids have no parents to protect them, no one to steer them and steer help to them? It's terrifying. They already see how helpful people aren't in the schools, where the limits are. And those are professional helpy people.

My kid, thank god, is far more socially able than I am. She gets along, she pays attention, she picks up fast on how things work, she's pleasant and polite, she's not driven by intense passions, she cares about social pressures and feels them deeply. Will that cause her pain, I think so --- but I also think, my god, she'll be employable. Unless I misread her badly, she'll understand how to make a career, and probably make a nice one, something that she finds pleasant and rewarding. (She's been thinking about it, in hilariously realistic and practical terms, since she was three.) She might even know how to choose a good guy (or woman). This is a boon, because I tell you what, it'll just about kill me to get her to 18. It's an enormous relief to know that the odds are excellent that she'll spread her wings and fly, and make a good life. Meanwhile, I say, "Please put away your clean clothes," and she says, "Okay," and does. On the other hand, the guy down the street has a son who's school-age and (last I saw him) nonverbal, ran into busy streets, shrieked all night, threw large objects, may still not be toilet-trained, and defecated wherever he felt like it. Who is going to take care of this boy and treat him well when his parents are gone? And how are his parents supposed to live? I saw them change -- both of them so bubbly and energetic when she was pregnant, and by the time they divorced and she moved away with the boy, she was a shuffling-around psychiatric emergency. I mean a real one, she came to my house paranoid and crying and needing to go to the ER.

If I were any of those parents? I'd be f*****g studying genetics myself, or raising money for research, bothering kajillionaires for big checks. Assuming I could pull myself together far enough to be presentable in an office after a year of nights of preventing mayhem.

Thanks for all of the responses. EmilieMulder, thanks for the info about parents, that's exactly what I wanted to know. About the suggestion as to how to phrase a response, I thought the same thing - many parents don't see anything positive about their child's ASD. I have mentioned in another comment in that Facebook conversation that I have seen positive things in every person with ASD I have ever met.

These are some of my thoughts: I'm not promoting my services (which I can't really offer much of right now anyway) or trying to make money, I just truly believe that there are already many evidence-based treaments out there that are effective for a large majority of people on the spectrum. I feel like genetic research is not going far because the spectrum is so vast and diverse. Instead, a large organization like Autism Speaks should be putting more money into actual services and get families off waiting lists so that they could get early intervention. I've seen ABA help so many and that's why I'm drawn to the field. Therapists work exactly on these crucial skills, like toilet training, preventing wandering, etc. That's my issue with this whole idea of cure and dumping money into it. The whole idea of parents struggling with their kids while being on the waiting list for services really bothers me because I am aware of the challenges that many parents do face every day struggling to manage their kid.Therefore, I feel that services are a priority and genetic research should be secondary, just because we have done tons of research on treatments and there are clearly effective treatments out there.

Perhaps trying to subtly search out for and highlight the positive things about each parent's child, even if autism-related, would be a good strategy for me to take. If I see that they are adamant about a purely defect/disease view of autism, then I would simply not associate with them. I'm not just thinking about interviews, I'm also trying to think as to how to approach them and enter a dialogue with them during things like conferences and other autism-related gatherings. I truly enjoy talking to parents and feel like I learn a lot every time I do so, along with getting the opportunity to offer some advice. That's why I am seeking out this kind of information. I've learned lots from this thread and every response has been very helpful. Thank you so much!

If I ever do have a child, I will adopt a child with severe autism and go through the experience myself. I think I know how to put the reason for this into words now: I find every person with autism (well, even without autism) to be like a puzzle. The puzzle can be challenging, but once I learn how to solve it, it can be very rewarding. I feel quite confident about being able to parent a child with autism because of my past experiences. I want to be able to raise a child like this and see him or her transform, but at the same time, get a certain comfort out of seeing behaviours similar to mine in my own child.

I want to hang around in the parents' section and see if I can help other parents, too. I like helping others and I want people to be happy. I wish there was no negativity or suffering and I always search for ways to solve problems through positive efforts and acceptance. If that makes me selfish, so be it.

If that were so, many more people on this board would be employed. Don't forget that behind each person here who can't live independently is a family, often just one person, whose life has had to be devoted to seeing that the person stays alive, housed, etc. And this is AS, generally, not severe autism.



Before I had a kid, I used to wonder why women came back from maternity leave so weepy. After all, they'd been gone forever and a day, the kids were in daycare, what's the problem? And that's because I had no idea at all what it is to be responsible for a fragile and vulnerable person, and how much work it is to take care of one. Babies are seriously tiny and fragile. And severely autistic kids are seriously vulnerable, and probably many are fragile in ways I don't know about. Having an OT show up and do toileting training...well, who do you think has to arrange it? And be there during the therapy, and help familiarize the OT with the child and get the child comfortable with the OT, and then do all the work of reinforcing the OT till the next visit, and keep track of progress, and find a different OT if that person's not a good match? It's all-consuming work.You can't just say "Oh therapies" and consider the immediate problem solved for the parent. Nor does it relieve the parents' worry about what will become of the kids. Even if adult programs are develop, they exist at the pleasure of legislatures and agencies, and their modalities depend on whatever is fashionable. (We have a conversation running, I believe, about restraints.) Once you're gone, your kid is at the mercy of these things.

In cases like that? As a parent? Yes, I'd flip a switch if one were available. Which is not at all to say that there aren't great things about each kid, some of them indeed autism-related.



Apart from whether or not an agency would allow it: Having/adopting a child in order to provide yourself with a learning experience isn't a good idea. There's no off switch for that one if it turns out to be overwhelming for you, and the child is helplessly dependent on you even if that's the case. And childrearing and puzzle-solving are not equivalent, even though parents do a lot of puzzle-solving.

I've always thought this was the case when it comes to the people on the board because a) not many people here have received early intervention and b) because many people here got diagnosed late, so they didn't have appropriate educational/work accommodations when they needed them. Societal stigma plays a huge role when it comes to the lack of employment for people with disabilities, too.

I was thinking more along the lines of centre-based interventions, not the home ones. Yes, when having therapists at home, you have to do all the work of hiring them and monitoring them. But it's different when you bring your child to a centre - it's more like daycare where you drop your child off and then pick them up.

And I agree - the institutions are not trustworthy. That's why it is important to get the child into a place where they can live independently and, hopefully, find employment as adults. We do need to change the society, too, though; the workplace environments are often very discriminatory. Many people are closed-minded because they either had minimal exposure to people with disabilities or are simply not learning to learn about and respect people with disabilities.

It's not just that and I agree parenting is not just puzzle-solving. I never said it is. I have trouble expressing myself in words properly which is why I didn't say this until the end and I guess I didn't even say it properly this time. I think given my expertise and personal experiences, if there is a child in a foster home who is severely autistic, I would be one of the best people to take care of this child. I do have the energy for it and will potentially have the resources, and I will be prepared. Yes, I want to go through the experience, too, and I acknowledge that it will be a long-term thing and not to be taken lightly. I specifically don't want an NT child, which is why I am adopting rather than taking the risk of having one of my own. I don't want to have a child I have trouble connecting to and helping out with typical social experiences because neither me or my partner ever really had any.

Of all things, what most drains me is being alone and not being around even the most disruptive kid. I just have that kind of personality.

Last edited by MathGirl on 11 Apr 2014, 9:42 am, edited 2 times in total.

I just want to say that Tarentella64 said exactly what I was trying to say except s/he said it better. Thank you.

As great as today's group of kids is doing, there ARE still kids that will be very difficult to ever employ. There is a wonderful boy graduating from high school this year that I've known since he was in 2nd grade, he has always functioned well enough to be mainstreamed, but the reality is that even as a senior in high school he still needs a full time aid. It is not easy to see how someone who needs a full time aid to get through the day in high school will ever be able to get himself up in the morning, feed himself, get to work, and work a full day at a job without assistance. He has a fantastic family and community around him, so if anyone has a good chance, it will be him, but, still, what are the odds? I can't imagine him ever cold calling potential employers, sending out resumes, and having it ever be clear that he is the best hire. For all the gifts he has, he will always be a risk to employers, and will likely require another employee to assist him. I still have hope, however, because his gifts are so worth sharing, but this is far from a slam dunk. It will take a lot of adjusting by the world to help him fit, and that is no small thing to ask. It really will never be as simple as more therapies or getting rid of social stigma. This is a community that has always welcomed and loved this boy. Yet he still needs a full time aid every day.

Nope, not at all like daycare. Most therapies are 1 hour per session, that's usually not enough time to even make a quick grocery run, supposing there is a store nearby. With driving time (and the different therapists can be all over town) and getting kids in and out of the car, I usually lose two hours of the day for each therapy. So you have a lot of dead time sitting in the lobby, unless you have siblings you have to keep entertained/behaving, in which case you don't even get a break to read a book or magazine. And you still have to do the work of hiring/monitoring the therapist, and the 15 minutes of daily therapy homework that she thinks should be no problem to fit into your day.

Interesting. I was more referring specifically to the kinds of people who go on this forum that I've observed. I know there are kids like that out there.

Hmm, then how do they do 40 h/week of intensive behavioural intervention at these centres? Unless you and I are thinking about two completely different things. I know ABA therapy is something like this, too, but not what they call EIBI here in Canada. That was more what I was referring to.

I don't know how many kids get 40 hours a week, in the U.S, anyway. I am aware that this was the original recommendation based on a 40 hr/wk model that may or may not be well-documented as being necessary. (I believe it is the subject of debate as to the quality of the methodology and data collection in the original studies. Our health insurance model is very different than in Canada and also I think many parents would balk at putting their young kids through a full-time work load.

I could be wrong, as I have no direct experience with ABA.

It is so nice to finally hear some people talk about the hardships of raising an ASD child. My daughter is 13 and recently diagnosed and she is high functioning, but her coping skills are that of a two year old, so of course I would love some remedy for her behaviours.

I think she is kind, sweet and intelligent at times, but other times I am going crazy trying to tear her away from her twin sister (she loves lying on her until you drag her off), getting her to attend school (she hates it and finds there is too much sitting and learning and not enough recess.) and a break from her tirades, foul language, demands and verbal and physical abuse.

My daughter can be like a giant toddler one moment and the next she is like the strictest parent trying to tell me what I should and should not be doing in my life.

I have read extensively on Aspergers and really look for the positives in my daughter and have helped her appreciate her differences. I think I did such a good job of making her feel good about it that she refuses to do any programs or groups that might help her.

Living with my daughter day after day can be a real struggle, especially since her twin sister is the only other person there trying to help me with her. We try very hard to keep her a happy aspie, so that the rest of the family can enjoy their lives too.

I can't even begin to imagine what it would be like to have a child with severe autism because the high functioning kind is a real stress on every aspect of your life too. I am glad that parents are starting to discuss how hard it is for them because I need to know I am not alone.