A piece in the Telegraph about a new pressure group – the Autism Liberation Front put me in mind with a recent discussion I had with a group of parents of autistic people recently.
This new pressure group is comprised of a group of (I assume) high functioning autistic people. Their motto?
I am not a puzzle, I am a person…..Here we’re silenced. Parents don’t speak for me.
There is an assumption most people make that autism is something akin to an illness i.e. that it is something that should be cureable at some point. This isn’t so. Autism is a condition or syndrome and as such there is no cure. Someone who is autistic will always be autistic.
This is one of the things that is most difficult to accept for parents whose kids have just been diagnosed as on the spectrum but accept it they must. Once you do accept it you become aware of the uniqueness of your child and appreciate the autism that makes them approach life in such a different way. If you cannot accept it then you are doomed to an unhappy life of ‘what ifs…’. As I said above, I recently had a debate with a group of parents who wished that there could be a cure for their childrens autism. They felt that because they had children who were NT (neurotypical) as well as autisitc that a cure would benefit their entire family. My take on it was that it would benefit everyone except their autistic child. How would you feel to be told tomorrow that society would no longer tolerate black people, or gay people or people with blue eyes, or people who were left-handed? What if you were told that there was a cure to make you white/straight/brown-eyed/right-handed? Would you take it because it would be ‘easier’? Of course you wouldn’t. Was Martin Luther King wrong to fight for justice? Emily Pankhurst? Ghandi? Would our lives be better if these people had decided it was too difficult? I even had one person in this debate say that it was right that society should be less accomadating as it would encourage ‘them’ to fit in. Thats the parent of an autistic child speaking.
The sad truth is that a lot of parents of autisitic people cannot see past their own desires for thier child. After all, no-one sets out to have an autistic child. However, these same parents are unable to come to terms with their childs disability. they can’t see that their disability is an integral part of what defines them. In the same way that I am right handed, they are autistic. It doesn’t define them but it is an undeniable part of who they are and to take that away from them is in my opinion simply wrong.
These same parents are also unable to appreciate the difference between cure and intervention. I think that interventions for some kids with autism are totally necessary. An intervention is something that intervenes into the situation without changing the fundemental aspect of who that person is. Megan for example, doesn’t speak and has speech therapy. This is an intervention. We intervene in her lack of ability to communicate. However, this speech therapy does not (cannot) alter the fact that she is autistic and always will be. She will always struggle to see the need for her to vocalise her wants but by giving ehr speech therapy she will be able to vocalise them (we hope) should she need/choose to.
The future for any parent is frightening. What will become of my child? Will they be happy? The future for the parent of a disabled child is terrifying sometimes. Megan may always require help and when Naomi and I die, who will be there for our little girl? Some residential care unit? Surely then I should wish for a cure with all my heart? No. the simple fact of the matter is that the choice is not mine to make. The only person who can make that choice is the autistic person themselves. Autism is such a fundemental part of autistic people that any other choice is tantamount to eugenics after the fact. Some kind of extreme-retro abortion if you like – “we didn’t like you being who you were so we decided to change you”. Well, not me. I love Megan and I genuinely love who she is. Would I have chosen to have an autistic daughter? No. Is our lives as parents harder than that of NT kids? Yes. Would I change Megan, change who she is? No way.
I hope that even those of you who usually come here for my design related postings can read this and appreciate how some disabilities are reinforced mainly by society. I hope you have a better understanding of autism. My own understanding has changed so much since keeping this blog and interacting with Megan after fully accepting who she is, autism and all.
The debate I allude to above ended badly. I was threatened with banning from the forum because I disagreed with the idea of a cure. I was told I was a bully for arguing my points. One parent said that Megans autism probably wasn’t that severe if I didn’t want a cure for it. How unfortunate that these parents are more willing to vent their frustration at their own children rather than at a society thats unwilling (as yet) to accomodate those who think differently.
Like their children Megan is diagnosed with severe autism. At age nearly 5, she doesn’t speak, sometimes forgets to use the toilet and still has nappies at night. She doesn’t sleep well and we sometimes have to drug her to get her to sleep if her non-sleep has gone on longer than our ability to stay awake (several days at a time mostly), she has to have 1-to-1 provision at her local school and we had to fight for months to get the LEA to give her a chance at all. She is terrified by certain sounds/smells/colours and only eats a very limited amount of food.
She also sings songs that to me, are the most beautiful things I’ve ever heard. She gives the best hugs ever. On the infrequent ocassions she says ‘Daddy’ it still makes me cry because from Megan every single word is precious. She is an expert at figuring out interfaces, loves Teletubbies, gets joy from such disparate things as the cat, Westlife, System of a Down, the covers of my Iain M Banks books, bouncing on anything that will bounce her, playing with her friends at school, being tickled – especially with my beard – under the arms, watching her huge DVD collection (ranges from Teletubbies to Wallace and Gromit to Finding Nemo). Every little victory seems bigger to us. Why would I want to ‘cure’ any of that?
Please read the cure section of neurodiversty.com for a greater understanding of why the word ‘cure’ angers so many autistic people.
Left Brain Right Brain 
Some very interesting points in there Kev, I guess, as you say, everyone handles the situation differently, and some people, even NT parents, still want what they want for their kids, I guess in these situations its jsut amplified.
To have someone truely unique like megan must be a real eye opener, one of my best mates, Richard has cebryl pausey (I doubt thats how you spell it) and what he does and says is not only, as you said, an eye opener, but a joy to experience…
One of the most important things you learn as a parent is that wishing something for your child is the road to hell 😉
Whether that child is disabled or not, the best you can do for your kids is arm them with the tools to make their choices in life. Trying to impose your own choices on them (not matter how benign your intent) will always end badly.
All kids are unique, all people are. Megan and people like Megan are very different. It is, as you say, an eye opener all the time. Occassionaly frustrating or depressing but always fascinating.
Thank you for writing this. It is encouraging to see parents who understand the difference between “no cure” and “no help” (the Telegraph article blurred the distinction intolerably).
Someone pointed this blog entry out, and I wanted to take some opportunity to correct a few things from the (very poorly researched) Telegraph article:
1. There is no such group as the Autistic Liberation Front. As it says right where the buttons are sold, “The autistic liberation front is an attitude, not an actual organization.”
2. Neurodiversity.com is run by non-autistic parents of an autistic girl (for reference — the article was unclear on that, too).
3. Many people involved in this movement (which is just a bunch of loosely affiliated autistic people who believe similar things regarding cure — we don’t agree on everything and I don’t know that we’re organized enough to be a pressure group) do in fact need substantial amounts of help of the variety that the article implies that we don’t.
The article implies that we’re only saying we don’t want a cure because we don’t experience various unpleasant aspects of autism or do not (or did not) need assistance with various things. (It, as I said earlier, blurs the line between assistance and cure and uses them almost interchangably at times.) There’s an article here by a few people who were fed up with that assumption, if you’re interested: http://www.autistics.org/library/dawson.html
The recent article in the New York Times by Amy Harmon does a much better job of describing this movement — I am suspecting that the Telegraph writers sort of skimmed that article and skimmed a few websites (I say skimmed because they clearly missed some important data that is in plain sight) before writing their own version, and it ends up being like a game of Telephone where things become a bit distorted.
The notion that your child must be “less severe” because of your attitude towards her is very similar to the reaction towards autistic people who believe these things. We get that a lot, basically people telling us we have no problems or else we’d want a cure. I don’t understand that mindset, but it’s out there.
Just wanted to let you know (in case you didn’t know already) that there’s definitely more to this than the article described (and that reality in this department makes more sense than the article does).
Great post Amanda, thanks very much. I’ve read Michelle Dawson’s article and the Weintraub follow up before but hadn’t see that rebuttal so thanks.
I’d also be interested to see the NYTimes article if you happen to have a link to it. I take most things from the media with a light pinch of salt so I’m not surprised to hear you say its got key ideas wrong.
“the choice is not mine to make”
Ahhhhh! Thank you! I can’t tell you how refreshing it is to hear any non-autistic make that acknowledgement.
No matter how we try to counteract the crude stereotypes continually heaped upon us, the mainstream just can’t seem to listen. After all, autistics are inherently “defective” (so sayeth the conventional “wisdom”), and obviously, there is no point in considering the ramblings of an “inferior” mind! And that’s just the tip of the iceberg…the bizarre twists of implicit “logic” continually used to rationalize the dismissal of our views would drive most people insane. Parents spend billions on “treatments” purported to help us express ourselves “normally.” But when, despite all the attempts at remanufacturing us, we actually DO decide to express ourselves…
“You obviously have no problems with communication, therfore, you cannot be autistic! You’re just a malingerer! Now quit making excuses, and do as you’re told!”
No. No matter how well we express ourselves, autism does not go away. We live with our radical differences of perception, expression, cognition, emotion, and skills-distribution every minute of every day, day after day, year after year, for a lifetime. And SOME of those differences truly are debilitating. But we can and do adapt to those differences that are truly a part of what we are, and we can live quite happily with those differences, thank you very much.
But that’s only one small facet of what we face. The real “disease” is something that almost no one in the mainstream will even consider: the factors that make living with autism seem so impossible do not come from within ourselves – they are not intrinsic to autism at all! The factors that are by far the most operative in destroying our quality-of-life are the physical and emotional dangers that come as a direct result of the widespread and habitually reactionary ignorance of mainstream society.
Ignorance. Fear. Suspicion. Hatred.
“They’re not like us. Therefore they must either be inferior…or evil. And since they refuse to accept their inferiority…”
You get the picture. Ignorance is the enemy here – not autism.
Thanks again,
–DKM
NY Times article should be in your mailbox…
I am both a psychologist and the parent of an autistic child. Both my ex-wife and I are autistic ourselves. Our biggest fear was having a child who was not like we are, and I think that this is one area of developmental psychology that has been sadly ignored: how what we hope for can depend on what we have experienced (in terms of having kids and having been kids).
It was interesting to see your piece of prose above, then, especially in light of what has been happening recently between the autism community and the autistic communities on the internet. I think your observation on whose right it is to choose (re: cure) is an interesting one, partly because I would imagine that – if being autistic were portrayed in a more balanced fashion than it actually is (e.g., by those manipulating the ABA-Autism industry field of which Michelle Dawson was writing) – maybe even fewer autistics would wish to be “cured” than the seemingly small number who at this point seem to wish for such a “cure”. (Convoluted… did that make sense???)
Anyway, your daughter sounds like my own, even though the diagnoses are seemingly opposite ends of the spectrum… because of similar wonders that Tuula comes out with, I feel as you do: why would I want to cure any of that?!
Thanks for having made your blog entry; it is so refreshing and validating to see that at least SOME parents can look for the good in their kid’s experience of life and try to intervene in the more distressing aspects without wanting to obliterate the kid by “curing” him/her.
Power to you both.
@David: “You get the picture. Ignorance is the enemy here � not autism.”
Indeed. The idea of ‘de-programming’ certain behaviours from my daughter whom my wife and I love is just….alien to us.
@jypsy: Thanks very much, that’ll be my lunchtime reading.
@David A: “(Convoluted… did that make sense???)”
Totally. Its a matter of presentation of concept, something that as a designer I’m more than familiar with 😉
“After all, no-one sets out to have an autistic child.”
What about autistic parents?
@staircase_wit:” What about autistic parents?”
What about them?
I didn’t set out to have a blue-eyedchild either but I did. I didn’t set out to have a left-handed child either, but I did.
What I meant was that its foolish to set out to have any kind of child. You can legitimately hope for some kind of child (e.g. I hoped we’d have a girl) but to set out to have one sort of child is strait-jacketing that child into false expectations.
Hi Kev and Naomi, its amanda from asdf i just wanted to say that i have been sad not to see you guys around latley but i can understand why as i do think you were treated unfairly by some people. I didnt get involved because i could see legitimate points on both sides and everyone was very emotional. Anyway i really hope all is well for you guys and that megan is doing good and the pregnancy is progressing well, Good luck to you all, Amandax
@ Amanda: Hi, nice to ‘see’ you 🙂 Megans happy and settled which is all we want really and Naomi is getting bigger by the day! Hope you’re OK – feel free (this applies to anyone who may be lurking) to stick around and comment/chat.
Hi Kevin (from another Kevin).
Just came across your site and this discussion. I have a son (Dafydd) who is a 9 year old non-verbal autistic and he’s my hero in all that he does. However, if offered a ‘cure’ I’d take it – not for ‘him’ but for the processing difficulty that can make the world such a scary place for him. I also don’t agree with the word ‘cure’, but like all parents want to protect and nourish my child. It’s not about ‘autism’, because beyond a clinical description, just what is it anyway? It’s about being a parent. His autism does not define him, but it can and does scare him at times..
I also have a baby girl (Megan!) who I love equally and will want to protect equally.
@Kevin: If I understand what you’re saying correctly, you’d like a cure for the processing difficulty that Dafydd has but not his autism? My own personal take on that is that what you’re talking about is an intervention i.e. you want to be able to ‘intervene’ in an area that has the potential to frighten him. As you say, thats just about being a parent.
I think (from reading a lot of viewpoints on autistics.org) that autisitc people are (quite rightly) sick to the back teeth of being written off by people – this is why the idea of a cure so appalls me.
In the 1970’s Ira Levin wrote a novel called The Stepford Wives in which a family moves to a seemingly idylic town. All the wives seem to be very old fashioned, un-liberated. It turns out that the men of the town have perfected robot technology so well it has enabled them to replace their actual wives with perfectly compliant androids who fulfill their every need – a Daily Mail readers wet dream! Anyway, this novel is what I think of everytime a non-autistic person talks about how much they wish to ‘cure’ their kids.
I think we also have to be mindful of the level of disability that that child is experiencing. My son is extremely ‘low functioning’ and the prospect of him ever understanding the concept of ‘cure’ is very very remote. Intervention is important because regardless of disability it’s what we all do for our kids.
So let the high functioning fight for ‘rights’, but also recognize the need for the majority to find an effective intervention.
I disagree with you slightly Kevin. I’m very wary of terms like ‘low functioning’ and ‘high functioning’. I also don’t think that autistic people (as evidenced above) are saying ‘leave us as we are’ or down playing interventions. I think what they’re saying (and anybody reading this please correct me if I’m wrong) is that ‘cure’ has definite connotations involving the total removal of any and all aspects of autism, whereas ‘intervention’ has at its root the idea that help, where its needed is always appreciated and necessary but that the autism is intrinsic. ‘Cure’ in these terms is akin to enforced gender reassignment, or what those whacko fundementalist Christian groups do when trying to ‘de-programme’ gay people to be straight.
Reading things like the Schafer Report or Weintraub’s letter it struck me as a delicious irony that these two are saying that if an intervention such as communicative therapy (e.g. speech therapy) was successful and the autistic person can now communicate better than before then they cannot be autistic and probably never were. This seems to me to be totally in contradiction to everything medical I’ve read about autism. I think people like Mr Schafer and Ms Weintraub are doing their kids and parents of autistic people a grave disservice, not to mention belittling a group of people for no other reason than that they disagree with them.
Hi Kev,
I have been lurking around here.
Anyway HFA/LFA are basically all to do with IQ and not with how severe the autism is.
As for a cure. I don’t want to be cured. I want a world that understands and I would want help that is effective in helping a child. Not losing all the quirks but help so that we can cope with life, which we can’t completely do at the moment. I think that an effective way of helping people in Early Years is the most important thing, and could do better than anything.
I also think that sometime the world is going to need us autistics as we think differently from everyone else.
Helen
ps – Term 1 Exam results 2 A’s and a B and unfortunately an E in maths
@Helen: Great to ‘hear’ from you Helen and congratulations on your exam results – I’m useless at maths so an E sounds great to me. I think I got a ‘U’ in my O Levels – which means my exam was unmarkable!
“I don’t want to be cured. I want a world that understands and I would want help that is effective in helping a child. Not losing all the quirks but help so that we can cope with life”
Summed up perfectly.
Just wanted to say that its good to hear you are all doing well. I have missed you from asdf but like Amanda understand why. Take Care.
Hi Sue, good to ‘see’ you too :o) I’m always here, drop by whenever you like.
I loved your comments about a cure for autism. The Telegraph article was very poorly researched, I told the author and he said that he was using the name Autistic Liberation Front as an umbrella term for autisitic rights groups, but that was not at all clear and many people have been confused by it, one person wrote that thay must all grow their own vegetables, as if they must be hippies or something, which made me laugh. Especially considering it doesnt actually exist.
I work on a site called Aspies for Freedom, I would like it if you had time to look and give an opinion, we are against a cure for autism and also pre-natal testing for autism. I dont know if you have an opinion on that.
http://www.aspiesforfreedom.com
@Amy: I have to admit I’m totally ignorant about pre-natal testing for autism. I’ll have a read of your site before commenting further.
I have a brother with autism and three children, one of which is has autism.
Its okay people with autism not wanting a cure but they are often not parenting a child with autism. They never seem to recognise the levels of difficulties their disability causes for those around them. What about the levels of stress that they cause for all of them around them. I have seen parents’ health being destroyed, parents’ lives being reduced to nothing by the difficulties of parenting these children, the experiences of brothers and sisters being damaged. It is about time we tell it like it is! Many of these adults with autism do not have children themselves and are unable to to talk about the devasating impact it has upon everyone’s lives.
This may be one of reasons that parents want a cure, and also because we recognise how difficult autism is for the person who has it. We seek a cure for cancer, diabetes, heart disease etc why not for autism?
I also wish to add that I note that adults not wanting to be cured are those with HF autism or Aspergers. They may not be as severely affected by their less able brothers or sisters who have a plethora of phobias and hypersensitivities.
I *am* the parent of a ‘low functioning’ child Jay. I don’t want a cure and my life hasn’t been destroyed.
I also know several adults now classed as ‘high’ functioning who were classed as ‘low’ functioning as kids. We as a society have to be very very careful about imposing our beliefs on others – even if those others are our kids.
Kev
I am also a parent of a child with autism. My brother also has autism. I have know many parents who also have children with autism. If I did a annoymous survey I can bet that the majority of parents would indicate the immense stresses and strains that having a child with autism has caused for them and all around them. I have seen the incredible and damaging effect it has on many members of the family. Why are we not allowed to be honest and tell it like it is. If you personnally are having a great time, I am very happy for you. But it widely recognised that autism has a devasting impact on the family, notably during the early years and adolescence.
Bring up children is difficult, but bringing up children with ASD can be sometimes impossibly difficult.
The effects of ASD for the individuals can also be extremely hard to cope with as well.
Of course it is politically correct to want people to remain impaired and disabled because we are afraid of offending people.
I personally want to see a cure, and want to see my brother and child grow up into independent and happy individuals – not lifelong dependent on others, isolated due to lack of social skills and underemployed due to learning difficulties.
Those high functioning adults should remember that the majority of their peers are isolated, suffer mental ill health and lack the independence that they enjoy.
I for one WANT A CURE
Its a difference of attitude Jay.
I don’t recall ever saying that raising an autisitic child is a walk in the park. Its not, its damned hard work. You have to become an expert in second guessing problems and pre-empting difficult situations and learning to cope with other family members who don’t understand how difficult it is.
However, my wish for Megan tor emain autistic is not born out of a desire to be PC. Its born out of a realisation that the majority of the issues that affect those with an ASD are comorbid to autism – target the _problem_ not the _condition_ – it is augmented by a further realisation that any desire I may have to cure Megan is purely that – _my_ desire and not necessarily hers.
All your points above reflect the situation is it pertains to you and your family, not to how your brother and son might feel about a cure. You should know (and I can show you evidence if you doubt me) that being autistic is not equatable to lifelong dependance on otehrs in 100% of cases.
Oh and my daughter is low functioning, not high and she’s 5, not an adult.
Hey out there! I just found this site, wanted to comment, not intrude. I am the mother of a two year old autistic son. He is self abusive, nonverbal, and have regressed to the developmental stage of a fifteen month old. i don’t fully understand how people can say they would not allow their children a cure, for something I’ve witnessed to be a devastating disorder that strips our children of the ability to function. Maybe some of you have children that don’t show the symptoms that mine does, maybe you do. A cure is not about stripping them of their identity, rather it’s about clearing the fog so that they’re identity can be fully maximized. As I see it, without treatment/intervention my child’s prospects are rather dim at this point. Please don’t be angry, this is my view.
Please Read This!!!!
i have 16 years old, i’m from Mexico, and i have aspegrer, isn’t a
“spooky” problem, it’s nice, because i see the world in a diferent way that anywone, personnaly in a more mistic, and beautifull way, i live in my world, but there is the problem, i understand people world, because i have medited about it, but the problem isn’t that,, our problem is ,, that we, can’t recive, or proscesing what people say, and, we neither can alwais choose well , wich words say,, our brain works in a different way,, we are “in the moon”, and because we can’t react normaly, we sometimes are seayed how a excentric,, or a stupid innadaptaded,, i will like a medicament, that can try this part of the problem, i’m no so different to you,, i just can see your world,, but, i have practice, and friends, i have saw your world, and i’m not a different person in it,, i just enjoied,,,i just will like enjoy it a little more
i’m sorry, but i liken your comment to that of a blind man saying that he has enjoyed his life even though he is blind . Yet if he were given the opportunity to see, I doubt very much that he would go back to total darkness. I also doubt very much that my child enjoys not being able to control his body, or be able to communicate to us what he needs. I say this because when he wants something and i don’t know or understand what it is that he needs, he hurts himself to show his frustration. My child os not in the world as much as he is only an observer of it. I have heard many stories of children undergoing treatments to remove the toxins from their bodies, therefore allowing them to escape the fog that surrounds their minds and are able to recall what it was like for them in the state of being autistic. Never once have i heard them call it enjoyable, likeable or ideal. They recount their time as horrible and frustrating, and wanting to never go back into the fog. Again i’m not saying that anyone is lesser here, i love my son, can’t imagine my life without him. i dare anyone to label him as embarrasing or again, lesser. in life you try to fix what is broken, accept the things that cannot be fixed. in this case i think that fixing is in order.
until next time, be well an
Rachel said: “i’m sorry, but i liken your comment to that of a blind man saying that he has enjoyed his life even though he is blind . Yet if he were given the opportunity to see, I doubt very much that he would go back to total darkness.”
You MUST read Oliver Sacks’ book _An Anthropologist on Mars_! One of the case studies is a blind man who is given sight through surgery. I shall not tell you what happens… you must read it:
(and when you are done with that, try Elizabeth Moon’s book… her son is autistic: http://www.amazon.com/exec/obidos/tg/detail/-/0345481399/ … the last chapter is quite telling)
Read this Rachel. You may find your assumptions challenged.
challenge is alright. we have a gift in which we are given the chance to express our own views and hear the vies of others.. i am drawing mine from what i see daily with my little boy and through th e hours upon hours of research that i have done. all i am getting to is that our children just didn’t happen to become this way. something dreadful is going on here, in my country, USA, there is now nearly 1 out of every 150 kids that are now autistic. for this to be touted as being a genetic disorder is insane. our kids are being damaged by , i believe, the vaccines that the government is trying to make us force into our children’s bodies, thus making them victims of a fate that wasn’t meant to be. my son was not born this way. he did not choose this for himself. i did it for him by ignorantly believing the medical industry was there only to protect my children. now, it is my duty as a parent to try to help my son to become better, by “fixing” the things that have gone awry in his tiny little body. I do not believe that autism is a mental disorder. i believe that the symptoms that are shown is because the body is so full of toxins that the brain misfires, causing the behavior in autistics.
oh, just another quick comment, kev, i did read the site from the link that you left. that man in no way daid that he thought that a cure would render his life meaningless. he was actually leaning toward being able to see. all inall his message was pretty clear, he was happy with is life , being able to see would be a plus, but it didn’t take away from his life not being able to see.
my son is defined by his sickness. it is his sickness that decides what he is able or not able to do. it controls nearly every aspect of him. i’ve seen him before he became ill, i see him now. this is not the same person. this is not who he was meant to believe that it is my duty my calling to help him to become well again so that HE can decide for himself what he wants to do in life, not being limited because of disablilty.
oh and by the way, i do subscibe to your newsletter. i am trying to see this from every point of view. i do not want to be blind from any angle for my don’d dake. until next time, be well and think good thoughts. RACH
Rachel, here’s what you said and I responded to:
_”i’m sorry, but i liken your comment to that of a blind man saying that he has enjoyed his life even though he is blind . Yet if he were given the opportunity to see, I doubt very much that he would go back to total darkness.”_
Thats not the same as:
_”that man in no way daid that he thought that a cure would render his life meaningless”_
No ones claimed anything regarding ‘meaninglessness’. But what he said was:
_”Further, for some of us, accepting a cure is a little bit like saying, “My life so far has been meaningless”._
The point is Rachel that he will make his own decision. Thats exactly as it should be.
hey kev, i hope you and your family have had a great day. i read about your little girl on earlier posts. no matter what our views may be, no one wants their child to be sick or injured in any way. that being said, o totally agree with you, nobody’s life should be considered as being meaningless. there are people with disability that have accomplished great feats, more so that some of us who are perfectly healthy. i do wonder though, if autistic children may or may not be able to comprehend the meaning of a “cure”. i am in no way saying that they have low IQ’s or anything like that. they perceive things differently than most, sometimes it isn’t for the best, as i am now learning with my little angel. oh, and by the way, i do enjoy “talking” with you and others on this site, it’s nice to get to see other viewpoints, whether i agree or not. it allows, i beleive , us to “tweak” our own way of thinking about things of this nature, which so many people tend to ignore and pretend that it’s not happening just because it hasn’t touched their lives….yet.
until next time, best wishes to you and yours. RACH
The comment about allowing people with ASD to choose is a moot point because for many of them they do not have the necessary level of understanding to choose.
I have an analogy – there are many aspects about being a female that I find hard to deal with – ie PMT, pregnancy etc – without wanting to take away being who I am I take the necessary steps to do something about this, especially having PMT is interfering with my ability to get on with my life, look after my family, do my job and get on with others.
This is the same as a cure for autism – if it enhances a person’s life experience then it should be welcomed by all. Issues like low tolerance to frustration, anxiety, challenging behaviour cannot be easy for the person with ASD to cope with, let alone those who look after that person.
There seems to be a conspiracy of silence about the impact of autism on carers and family members. Being egocentric, this is often not recognised by the person with ASD but everyone makes huge sacrifices for their benefit.
Hi, Jay, that’s a decent analogy I guess. One can be female, and not want to cure femaleness, even though one wants to mitigate some undesirable aspects of femaleness such as PMT. Same with autism. One can be autistic, and not want to cure autism, even though one wants to mitigate some undesirable apects of autism.
There’s no conspiracy of silence about the impact of autism on carers and family members. The vast majority of media pieces on autism include something about the devastation on the family and so forth. I have to disagree with you there.
Anne