Do all parents with severe ASD children want a cure?

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Nothing wrong with asking penetrating questions, whatsoever.

If we didn't pose questions, we'd still be living in tree branch shelters trying to prod large game over precipices for our dinner.

The problem lies in people stuck in an ideology, rather than a real-world perspective.

I just wanted to piggy back on this.

One thing that parents of kids with ASDs should keep in mind here is that adults with high functioning autism may have gone through some traumatizing experiences as part of "treatment". Treatments for ASD are not always benign, and misunderstandings between NTs and people with ASDs can cause a lot of pain for the people with ASDs. Topics involving "cures" can be very disturbing for them as a result.

Additionally parents are right to point out that parenting a child with an ASD, especially one with a lot of needs can be very difficult, and they are right to want relief for themselves as well as their children. When people criticize this goal, it can feel like a personal attack.

It's important for people on both sides to realize that each side has gone through some pain, but that by seeking to understand one another, each side can better understand their own situations: people with ASDs will better understand their parents and the difficult decisions (and possible mistakes) that they may have made, meanwhile parents of kids with ASDs may have an understanding of some things their kids may have been thinking (even the non-verbal ones). Even though a person with high functioning ASD may not completely know what a person with low functioning ASD is going through, they do share some common experiences and deficits, and so we should at least try to understand their perspectives.

People with ASDs and their genetically similar families are often portrayed as having little empathy. I've noted that many people on these forums resent that characterization and I've seen a lot of empathy on these forums. When dealing with hot-button issues like this, let's try to remember that although each person's recommendations don't apply to every situation; they are often still responding to a personal struggle, and ongoing pain. We should try to respect that, forgive minor slights and show some empathy.

^ I agree. I don't see anything that was said in this thread as having been intentionally hurtful - the internet allows for more free speech but also for a lot of unintentional misunderstandings. I can see both perspectives now and I understand why some things said here might be stressful for others to take, but it's not anyone's fault, really. It's inevitable for all of us to be victims of our own circumstances and to be stuck on certain viewpoints, with all perspectives having their pros and cons.

I don't think that's what some of us (in our capacity as parents) were trying to insinuate. I have no problem with anybody debating anything on this forum. What I (and other parents of kids perceived as "lower functioning") objected to was for people to ask us whether we would opt for a cure and then try and then debate the merits of not curing our children (I'm now specifically referring to mathgirl here) as if they somehow think we are ignorant for wanting a cure.

Honestly I doubt there isn't a single parent who would not hesitate curing their lower functioning child for ,many reasons including allowing i) their child to function in society ii) releasing their child of self-injurous behavior and iii) providing their children with cognitive and social tools to survive on their own without relying on the charity of strangers.

You made a comment earlier about the state being able to provide for severely autistic children. I'm afraid I know more about this subject than most of you here as my mother worked in an institute for intellectually handicapped for nearly 30 years that included a large number of clients who were severely autistic. I'm afraid there is minimal protection for these children in government institutions from both sexual and physical abuse (inflicted on them by therapists, social workers, minders and other clients). In particular the use of fairly traumatic aversion therapy that require no form of consent and minimal monitoring or review. It's a published fact the majority of these children and adults have symptoms of PTSD that is acquired from their time in institutions. My mother confirmed this during her time working in a government institution and it made her sick to her stomach that she was powerless to stop or prevent abuse of her clients.

It's for this reason that debating parents on this topic is cruel (as hismom said). Walk a mile in our shoes before passing judgement on us.

Hi KOR,

I also think hismom's comments that she would abort her child if she knew the child is severely autistic using a "hypothetical" prenatal diagnostic test is a little bad taste. But I think she is only voicing what the majority of non-religious parents would do when faced with the predicament of having a severely disabled kid. There isn't reliable figures but in the USA the estimate is around 70%-90% of parent's faced with a positive Down's test opt for fetus termination (I'm assuming the rest have religious conviction about abortion so don;t go through with it).

Society's expectations or perception of society's expectations and personal trauma has a big influence on why parents do this. I know you are involved in lobbying for people in your position and I think it's important to understand what obstacles there are in society that make parents wish to abort their child if they are told the child will be disabled. In some ways this the final frontier for social cohesion that we talk so much about.

Last edited by cyberdad on 17 Apr 2014, 1:14 am, edited 1 time in total.

I'm glad to hear you've learned a new perspective

I think anybody who only sees autism through rose tinted glasses, are as bad as those see nothing positive at all.

My impression having extensively been around people of varying views on the subject as this polarization not helping.

The best form of advocacy is straight dialogue, without political correctness. None of the fancy PR campaigns.

What in effect is happening is both side have misconceptions about one another, the two opposing poles aren't actually as bad as each make out. But they are almost sworn enemies, out of ignorance of one another.

This really belongs in another thread, but also it need to be pointed out that a dx is only part of person. I have one, but I don't use my label, however I have no problem with those that do. I know identity is important, and this can be part of a stage in life, but for most of us there is more than meets the eye.

Cyberdad,I am attempting to put myself in your shoes.

I'm aspie as well as having the INTP personality type.

http://www.16personalities.com/intp-personality

Like Mathgirl, I seek to understand.

Will you please humor me on this.

Let's set aside the whole cure debate right now if you don't mind. Let's assume no cure is possible.

Let's assume institutionalization is the way to go.

Let's assume there are people who are so low functioning they need to be institutionalized.

My questions are as follows. Why is the fox left in charge of the hen house? Why aren't people who do these things punished for their crimes and are given life in prison for these things? The solution seemed to be de-institutionalization and a lot of institutions were shut down. Why throw the baby out with the bath water if some people needed to be institutionalized?

Lets assume....a strawman.

Very few parents want their children to be institutionalized, most actively fight against it regardless of if they want a cure or not.

I think there is a false assumption that wanting a cure, is unloving or uncaring, which could not be further from the truth.

Also some believe that such parent wish to write the child off. This also couldn't be further from the truth. many actively campaign for against this, when the state tries to make out the child is not capable.

My personal opinion is different. I see a set of trait, you can't cure everything about a person, however there is nothing wrong with wanting to change thing that cause their child unhappiness, and often it is the child themselves who indicates this not the parent.

My advice to MathGirl, who is considering being a therapist: Spend some time with families from different perspectives an backgrounds. But what I mean offer to volunteer you time. Do it over the period of at least a year meeting as often as is feasible. you may need a charity program to start the process, but after a while it is just family friends.

I never spoke about the "state" protecting severely autistic people. That was somebody else.

Of course, one has to look at the parents' perspective; I actually did state that.

An example of an institution which did not protect its clients was Willowbrook, which was reported upon extensively by Geraldo Rivera around 1971-1972.

I'm not a fan of institutions or mental hospitals. The "therapy aides" tend to be cynical beasts who have nothing better to do than act like prison guards.

As I stated before, I don't believe in a total "cure." I believe in an amelioration of harmful symptoms, and meeting NT's half way in social situations. It is obvious that self-mutilation, for example, is not the way to go, and must be dealt with aggressively. Increasing the quality of life for autistic people does not necessarily equate to a "cure."

---Trigger Warning--about abuse in institutions----for anyone who needs it---_










Institutions are by their very nature prone to this kind of abuse. Orphanages, mental institutions, nursing homes, prisons... The lower the communication skills or credibility possessed by the client, the more victimized they tend to be.

Some people are attracted to these types of workplaces b/c frankly, they are sadists. Some become abusive because the work doesn't suit their temperaments, and they take their frustrations out on the residents. Then you have the people doing a good job at what they are supposed to be doing, who try to help the residents but have to deal with the politics of the situation to try to protect people.

It is hard to establish proof, as the residents are either unable to communicate, are thought to have have no credibility b/c of age, mental faculties/dementia, criminality or whatever, depending on the person. Depending on how bad the culture of a place is, abuse is easily done in secret; or if a place is bad enough it is out in the open.

I am not saying all places are like that, and certainly not all the workers. However, it is much easier to abuse certain classes of people than others. You hear about things even in schools, and those kids are on balance, more likely to be believed. Even in schools you have to worry, especially if you have a kid with communication problems.

When we pulled my son out of public school, it was one less thing I had to worry about, even though that is not why we did it. I trusted the people at what was his current school, but going forward to the next school, I would not have that trust, and there would have been too many classes and teachers for me to be sure. Even though my son is verbal, he is a poor communicator, misunderstands things easily, and when he does, he often uses hyperbole. If Spaghetti Monster-forbid, something happened, and he made an accusation of anything, he would not have been considered credible. Even more likely, he would not have told me until a year later or something. I am still finding things out about pre-k, I did not know about (He is 8 ) ---nothing abusive, but things I would have liked to have known.

Edited b/c the "8" and the ")" made an emoticon, by mistake.

kraftiekortie Agreed.

Tons of institutions were shut down because of the abuse. For years and years people with special needs were hauled off to them because it was inappropriate to have them a home so people were embarrassed having one so they would ship them off to one and forget about them. There the child would get abused and neglected and grow up living in one and then in the 1950's, that started to change because people started to realize it wasn't right putting them in one so parents would refuse to put them away. There were still others that did it of course and there was special ed when my parents were kids so obviously things had changed back then too and by the 1980's it wasn't very common anymore and it's not like what you see in Rain Man where the institution was nice and everyone there was well taken care of cared for and the rooms were homey. My great grandma lived in a nursing home too and she was happy there so obviously she was not mistreated there so I know not all nursing homes are bad.

Yeah abuse still happens in other places like in group homes or public schools or homes for the elderly. I am aware how bullies can work in packs and they can make it look like the victim is paranoid by them doing "innocent" things rather it's putting their hand in front of their faces or "accidentally" bumping into them and the victim reacts to that and bam they are the ones in trouble and the teachers think the victim is paranoid and the kids were innocent and it was not their intent. That is what bullies can do. I think it's some form of manipulation. Passive aggressive they would call it. Even if the kids are innocent and the person is paranoid about being picked on, I think the teachers should still be on their side and listen to them and not treat them like the bad guy or otherwise the child will feel you are siding with the "bullies" and it can do more emotional damage and make the kid not trust anyone. Then the teacher and parents may wonder why the kid never tells them anything or comes to them for help when someone is giving them trouble. Why bother if they will believe the other kids instead and treat you like the bad guy or tell you it's all in your head and they do nothing about it?

hi cyberdad!
had not known hismom was interested in the use of abortion so all posts of mine in this thread were without knowledge of that,am not against abortion am pro choice in that area, but am against the use of people applying death sentances to any level of autism based on someones own personal experiences as we are all different and all have different levels of support,those of us who have very high levels of support do better with quality of life.

seeing other peoples view is a concept that find extremely confusing as am unable to think like anyone else but self, so can only apologise if have offended anyone else, am a member of a few mainly parents of autistic kids groups to help those who want to understand what its like from the rare view of someone on the severe spectrum and also to learn how parents think.

countries definitely differ on the view of abortion of disabled children-or any baby in general.
an uncle and auntie of mine had given birth to multiple disabled children; two of them are in their early twenties and have both mild autism with mild intelectual disability and two of them were very profoundly disabled children-those two were born with different terminal rare disabilities and the doctors said they woudnt survive birth,they both survived longer than a year each and they said had they known they were like that they woud never have aborted them though to be fair to this argument-they live in a country where religeon/catholicsm is still allowed to make the laws AKA ireland where abortion is still illegal [anyone in ireland who wants an abortion or NEEDS one otherwise they will die has to come to england to have one].

as for the talk of abuse in institutions, in the UK they actualy dont get away with it as easy as they used to with us,we have a institutional 'police' here called CQC who do both random and prepared visits throughout the year,they go through all the staff communication books and service user daily diaries plus they go over all moneys belonging to service users to check none of that has been abused,anything we by has to have a paper trail by law.

and the most recent abuse had suffered; sexual abuse at greenways A&T intelectual disability hospital was quickly followed up with an investigation by staff;it became a safe guarding issue so the safe guarding team got involved and now the SMART team are currently involved again as they are wanting to take it to the next stage.

any abuse have ever seen of fellow residents who have profound communication disability, have always emailed the staff or sister so they coud look into it and its always been followed up, there are many good care facilities- am living in one now and the last centre was great to.
we deserve to live as we want,and not be looked upon as burdens or suffering, simply no one can know that a person is suffering without being that person,its not for anyone else to make that decision.

As Hismom mentioned this type of health services seems to attract many (not all) people with a predisposition for externalising onto people whom they perceive as vulnerable, This can vary from controlling personality types to people with sadistic abusive tendencies. This is highly unfortunate but unavoidable until there is a standardised test developed to filter out such individuals in job applications.



As mentioned already the victims are deliberately picked on because they a) cant defend themselves b) there is often no third party monitoring and finally c) the victims are often unable to communicate effectively so there is no danger of recrimination or reporting...



There is no other option apart from group homes. All I am saying is that for many of us this what gives us parents sleepless nights if anything was to happen to us. I'm not just talking about death, if one or more parents are incapacitated (i.e. permanently injured) and we are unable to pay bills then the spectre of institutionalization looms large.

It's a relief to hear this. I'm hoping that more systematic checks can be put in place to give piece of mind to families whose relatives have been put in institutions. The sad fact is extended family will more often than not opt out of making the necessary sacrifices to look after a disabled child if something happens to the parents.