I know that because itâs a broad spectrum people like my daughter are assumed to be jigh functioning. When in fact she will never be able to function alpne.
I could function alone (no support), but it wouldnât exactly be high quality functioning . The situation with very little support in Essex was not at all good .
It would,of course, be much worse for your daughter.
My daughter is like a 6 year old in a womanâs body.
I think those who are very high functioning, and see it as a gift, dominate the agenda ; at the expense of people like your daughter and parents like yourself.
Yes and the whole âwe wouldnât change anything, heâs perfectâ
When your kid canât wash their hair on their own, yeah youâd change stuff. I wou
D give anything so she could have a normal life.
@anon4362788 Iâm sorry about your daughter. Itâs very sad
I know many of the 'high functioning â types are very much against there being a cure. I think this is because they fear losing what they see to be the positive elements of being as they are.
Whatâs needed is something that helps with the negative parts especially for the severely disabled, and yet retains any good parts that there may be for some .
i donât need sympathy, she isnât dead or gone.
Well if there were a cure then people who are high functioning could skip it. It isnât fair nor right that they think they are the voice for all.
I think that getting rid of Asperger and other labels hurts the entire sector. i donât want some high functioning twit to think they can speak for me and my kid. And yes, anyone that tries to speak for everyone is a twit.
@anon4362788 I totally agree with what youâve said . I have Aspergerâs , but donât see it as a gift sent down from above . Itâs resulted in very few friends over 62 years, difficulty managing without help, and never having worked. Those who see themselves as the Aspie elite are intent on causing more problems for people like your daughter and you.
yeah, they do this with Down syndrome too, the general public thinks automatically high functioning.
No, just no, in my sonâs case.
I sometimes worry about doing this with my work in mental health advocacy. I am all about the public realizing we arenât violent, but I also donât want them to start thinking people with sz are all like me, and then start voting for cuts to disability benefits. Itâs a spectrum for a reason. If a cure for sz showed up tomorrow, I honestly donât know if I would take it. But I sure as hell do what I can to help the research so a cure can exist for others.
@firemonkey Parents are also to blame. I see a lot of âmy child is perfect the way he isâ. Maybe for them. When meltdpwns happen with broken windows or self injury, that isnât perfection.
Donât get me wrong. I love my daughter. i just would jump on a cure to unlock her from her prison. Iâd love for her to wake up and be a normal 17 year old who gets to drive, have boyfriends, and go to school without dping elementary school work.
BUT I get to celebrate more than other parents. Ever step forward is an accomplishment. She can read well, can hold a conversation is the other person keeps reminding her what theyâre talking about. And more.
Really?
I would think most of us would take it in a heartbeat !!
Well, Iâve always had a very mild case, and my meds take away my positives 100% with no side effects. I got extremely lucky.
the best thing you can do to any child is put peace in their heart.
My son, almost everywhere was calm with me. Not the same with my parents.
Itâs good that although you are lucky , in terms of how severe your illness is, you are still mindful of those less fortunate . There are too many relatively lucky ones with scant regard for those less fortunate .
Maybe the thinking was that if all people with autism were put in the same category (spectrum) it would reduce stigma on the lower-functioning people with autism. Thus the lower-functioning people with autism are just like the higher-functioning people with autismâbut they donât function as well.
I think this is an example of how it can be counterproductive when a community tries to be too inclusive.
@anon4362788 I know but it has to be hard