WeAreAutism.org - The Social Support Network for People Living with Autism

angela327

Kathleen,

You are doing the correct thing by trying out therapies that might help your children to better communicate with the rest of the world, yet not trying to squash out who and how they are.

I'm sure the balance is very hard, but you seem to have a good handle on it.

I like to think of working with autism as being similar to working with a more 'standard' language barrier.  It is important that your children not forget 'the language of autism' so to speak, and that they retain that which makes them unique individuals, but it is ALSO important for them to learn the 'language' that a large portion of the people in their lives will be using.  I believe it is possible to hold onto one and learn the other.

34 months ago

Kathleen

Thank you!  You certainly have a way with words Angela.  Our Autism is very much a part of who we are.  I don't want them to lose that.  I just want them to learn the 'languge'  well enough to survive here as independantly as possible. 

34 months ago

Eden

I cant see wat you've done wrong Kathleen, all I see is a loving mum
doing the best she can to help her children manage their lives better. Lets face it this world is not geared up to
people with autism, I think it should be but the fact is it isn't so
one has to do their best and give their children [with or without
autism] the help they need. Living in a society that doesn't
comprehend the culture of autism is tough and I admire you for helping
to make the world around them a little more user friendly, it doesn't
matter if you're trying "this thing or that thing" so long as it helps and does not harm.

I'm new here and don't claim to know everything in fact I'm aware
that we all carry some ignorance to some level in general but my intentions are
always caring and helpful... I hope I wont get any angry messages, I
have enough stress in my life as it is and I hope you don't get anymore
either. In fact I have to admit I am a little confused why you got
angry messages for helping your children?

Anyway I have babbled much, I only hope it was appropriate babble
and made some sense? I wish you and your family all the best Kathleen :)

34 months ago

Kathleen

Thank you very much for your kind words of support.  I wasn't sure what I was doing wrong either.  I wish you and your family all the best too Eden. 

34 months ago

Lilly

I agree with you whole heartedly. It is a lot like discussing religion or politics here when we are talking about therapies, and "cures".  The fact that the people who are functioning as autistic adults can't always understand that as a parent of a child who is not able to communucate the parent needs to know that they are doing everything in their power to assist their children in having as satisfying and functional a life as possible really makes the parents feel even more like outsiders. We are not trying to change who our children are, we are trying to help them blossom and grow into someone they can be proud of themselves, as we are already proud of them.

34 months ago

Isaac

I received an email a couple weeks ago from someone who works with autistic children. She sent me some information about a program, which, is finally receiving some scientific scrutiny after many years of well... none. I don't see the problem as being a problem with the therapy they suggest, I see the problem as a problem of a lack of interest in studying the technique on the part of people studying autism. The program is called Son-Rise and to give a very high-level view of the technique, it involves joining an autistic child in their own space (getting into their world) and then gradually working on drawing them out by doing things like praising eye contact.

I'm 34 and diagnosed with Asperger Syndrome myself. And I'm going to make an admission here... I haven't responded to her email because there are concerns I want to express about the program and the way it's presented, but I've been paralyzed by the fear that voicing my concerns might sour a potentially very fruitful relationship that could help the AutLabs project in the long run.

I really desperately want to mention the fact that their videos and other materials make no bones about the fact that they believe the program is a "cure" for autism -- not "that it helps", not that it "reduces the most challenging symptoms", because that's not what their materials say. Their materials make comments like "keep records of your sessions so that when your kids grow up and don't believe you when you tell them they used to be autistic, you can show them the videos".

The problem I have with this a complicated problem. We know because we have fmri studies that have shown that people with even mild autism like Asperger Syndrome have underdeveloped activity in the fusiform gyrus, which is the part of the brain that recognizes facial expressions, and this is likely closely related to our difficulties with social cues. To say that Son-Rise is a "cure" for autism, without knowing even if it affects activity in the fusiform gyrus is to my mind disingenuous, albeit certainly hopeful and that hopefulness is a good thing. I also think it particularly unlikely that this program, while it might improve face recognition, would have any impact on the fact that the microcolumns in an autistic brain are more densely packed, which I suspect is related to many of the related sensory processing disorder (SPD) issues.

Are kids who are treated with the Son-Rise program better equipped to handle the outside world? I think it's likely. But right now we don't even have enough scientific data to say that, much less that it is an outright cure as their website vehemently insists.

And that also leaves me concerned that when an autistic child reaches adulthood and the parents feel they've managed to overcome the problem through the Son-Rise problem, that they may not understand when that child starts losing jobs over and over and over again, that the job loss is still a result of their autism, and not merely because they're "lazy" or "not applying themselves".

And I really worry that attempting to express these concerns to them could butcher a new relationship that has the potential to genuinely benefit the Autelligent Laboratories project we're working on to create meaningful jobs for adults with autism. 

So to make the long story short, I just wanted to share this with you, to let you know that you're not alone. :)

33 months ago

Laurie

At My support group I hear people on the spectrum saying that they want to hold a job and have a boyfriend or girlfriend and all the things that everyone else wants. Only on line I hear things like Dont You Dare Try to Cure Us! you do what is right for your family, and dont worry about the opinions of people who you are never likely to meet.

33 months ago

Chels

Kathleen Thanks so much for bringing this up! I view people on the spectrum as not needing a cure. I celebrate neurodiversity. I have had many years of therapy where they thought lots of other things were wrong with me until they finally realized that I have a different neurological system. We are wired differently. Therapies can help us cope in a world where we don't belong, but it won't change the differences in our brains. And that isn't a bad thing in my opinion. I have a beautiful baby sister who isn't a baby anymore...but is also somewhere on the spectrum. We are beautiful people and the only difference between me and her is that she grew up with people believing there is nothing wrong with her and her difference is celebrated. I grew up in an environment where I was told things were "wrong" with me and so I developed an insane amount of psychological problems because of it. My sister is happy and proud of who she is, I am learning to be the same and anyone who doesn't like being around me or finds me strange I do not waste my time with. I have  been involved in organizing a local chapter of a radical community that celebrates neurodiversity and mental health we are going to get a community house and everything. I think if you find people like you then you are less likely to struggle with the social challenges of ASDs. It sounds to me like you are a loving caring mom and your children are lucky to have you!

33 months ago