"Real autistics" versus Aspies and HFA

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I looked on JER's blog, where there was a post similar to what the article was about, but it is still vague to me what autistic people want to tell researchers or how autistic people want to work with researchers. It seems like he wants autistic people to be in more decision-making roles when it comes to research, but what kind of role specifically, and who would be qualified to be in these important roles, how will it come about, and how it will affect research, he didn't say the specifics.

I know LFA athletes from Special Olympics and their parents are very supportive of me and I am very supportive of their kids as well. And maybe Special Olympics is just that kind of environment but I have not met a single athlete or parent who has not been 100% encouraging and supportive of me even though I am probably the highest functioning athlete in my county and I could easily pass for NT at first glance.

I am not saying that others have not been hurt or treated badly because I am sure you have been or you would not be mentioning it. And I am sorry that you have been treated that way because it is horrible. But hopefully that kind of thing will decrease. That is my hope anyway.

be careful with this though. because the implication comes off a lot from people who say this that those you don't appear mild just aren't trying hard enough. which is not true at all.

not that you dont try hard to appear mild. but that no matter how hard me and people like me try we couldn't appear mild. this isnt to undermine your struggle but also please be aware how it may come off.

I think they're angry, narrow minded and unempathetic.

They're angry and frustrated by the burden of looking after their severely autistic child and probably angry at us or parents with more high functioning children who still call it autism.

But as I say to these people if severe autism was the only form of autism it wouldn't be called 'severe' now would it?

On the outside I look like an everyday functional person but then I can shut down, have huge explosive meltdowns and be unable speak, use my thoughts to my full capacity. I don't work am on disability. I tend to regress into a child-like mind for my own protection.

The narrow minded part is easy - they won't open up to us to even try to empathise with our struggles. These people may have some AS characteristics or show no signs of autism, which means we have symptoms more severe than them. Sorry. Just being a bit cheeky.

I think they're best to be ignored.

I've also met people who b***h about HFA and ADHD kids, saying that their parents don't discipline them enough and other BS.

I think he meant that other autistic people can have insight into autism where NT researchers fail to grasp.

Maybe he meant more autistic medical experts, maybe he meant survey autistic people for their input. This is already happening in our Universities. I get many call outs for research that asks an adult with ASD to fill out a survey or take part in research. I think that's what JER was getting at.

I was thinking more about "aspie burnout".
The other way in which someone might be incorrect called "mild" is that whoever's saying that has never seen then in a situation they struggle with

It's not absurd, it's human nature. Somebody's life is going to be ruined by looking after that 100% disabled person. I could not do it myself and have the utmost respect for people who do. If they want to have the occasional bitter sideswipe at less disabled people, then I feel like the least I can do is not make them feel guilty over it: I certainly ain't prepared to take over their caretaker duties for them.

I understand what you're saying. It can still be disabling but the point I was trying to make is that they're still on the spectrum even though they're not necessarily as disabled by it as someone with low functioning autism. Therefore, to say that people with high functioning autism are not "real autistics" is incorrect.

My family would just put them in a group home or something like they did with my grandmother when her husband died of old age and she had Alzheimer's. She went in some care home for the elderlies.

I don't know why some people have to be martyrs. They are probably afraid of abuse because of horror stories we hear.

http://jerobison.blogspot.com/2014/12/h ... -dont.html

JER is always so diplomatic, much kinder than my response would be.

Geez-a-LOO----where is KingdomOfRats, when ya need 'er?? (I so, totally, miss her!!)

Bottom line, for ME, is we are ALL hurting, HAVE hurt----WILL hurt----and everybody's problems, issues, whatever, are the WORST to THEM, because they're the ones experiencing them!!

I certainly wouldn't want someone to tell ME that my Autism is not "real". I don't mean to rude, but some of these parents of Autistic kids, can be a real "pill", sometimes----but, as someone else said, I truly understand that they're lashing-out because they, TOO, are hurting.

Whether or not a caregiver feels their life has been ruined by having a severely disabled family member they are responsible for looking after depends hugely on what supports the caregiver has, and also on how they feel about their caring responsibilities and any changes in their life's plans that they have had to make.

Some people dedicate their lives to caring for severely disabled persons 100% by choice -- people they aren't related to and have absolutely no obligation to care for.

I don't think that looking after a severely disabled person ever ruins someone's life; it's lack of community and professional supports and services that leaves caregivers all alone and struggling to look after their severely disabled family members that ruins lives.

Our lives are not ruined because of my relative's condition. It is someone in my family.

And I understand that people can be bitter for the care they have to give to others sometimes. I have even felt that bitterness because I have two people in my family who are have severe special needs. So yeah, NiceCupOfTea, I agree with you that it is human nature to feel that bitterness sometimes. That is absolutely common. What I don't agree with is that people should be angry at those who are less affected and make them feel guilty just because they are caring for others who are more affected. I have been the victim of that as well from some family members and they have used that to manipulate me.

How someone feels about caring for a severely disabled person has nothing to do with others who are less affected by a the same condition. The less affected people did not create the struggle of the more affected one nor did they create the challenges of caring for that person. The less affected people also did not label themselves a milder version of the greater affected person. That is a diagnosis that was given to them. They did not ask for it nor did they create it and they certainly did not get put onto the Spectrum just to cause a caregiver of a greater affected person bitterness and grief.

So I think that you (I use the word "you" in this paragraph to mean the angry person caring for the severely affected person) can be as bitter as you want to be if you are having a challenge caring for a severely affected person but don't make it about me. What you feel has nothing to do with me as a lesser affected person. It only has to do about how you feel about the specific situation that you are in. Whatever they diagnose me as or what they call me has no bearing whatsoever on your specific situation in caring for the person you are caring for. And your bitterness has nothing to do with me, I did not cause it. The bitterness comes from feeling overwhelmed or wishing you did not have to care for the person you are caring for. And I, as a lesser affected person, did not cause either of those things for you.

And like League Girl said, ultimately you are caring for that person because you choose to. No one is obligating you to do it. It is not a crime to turn someone over to the state or to a private organization. It is usually not best and there are a lot of repercussions and feelings that go along with that but plenty of people don't choose to care for their severely disabled relatives for whatever reasons they have.

Yes but because they blog they are spreading their belief that people more HF than their severely disabled child has nothing wrong with them which will in turn make more people less likely to believe we have autism.

It's not an occasional bitter sidesweep either.

I know a woman, two actually, with severely disabled children and they still have an open mind about people who are more high functioning than their children. Just because these people have a hard life of taking care of their disabled children doesn't mean they have to be a prick about it.

And I agree it must be a tough job taking care of a child like that but it takes an even tougher person for not putting down those who have a milder version of the disorder.

I had an interesting experience last year. I was at an event for disabled people and I was standing next to two women who were going on and on talking about their kids who are on the Spectrum. One woman had HF adult children who are on it and the other woman had a teen. The teen was pretty HF but nonverbal. They were standing right next to me as they were talking and one of the women said. "People just don't understand how hard it is to have a kid on the Spectrum." When she said this I interjected and said, "And many parents also don't know how hard it is to be a kid on the Spectrum." They looked at me like, who do I think I am and what right did I have to talk about the Spectrum because I don't have any kids so I certainly did not have any idea of anything about the Spectrum. And they were wondering what I was doing at that program anyway since I obviously did not have a disabled person with me. Then I told them I had Asperger's and that I was there as a disabled participant.

I then went on to explain to them what my life was like and how as an HFA person my future was very scary and unsure. Because their kids are LFA, they have all kinds of resources to care for them once they are gone. I told them that because I am HFA, I don't have those kinds of resources and were I to lose my husband I would probably end up on the street or worse, dead, because I have no way to support myself financially because of my specific issues which have kept me from successfully being able to work. This was all before I got hooked up with OVR so now, with their help, I have a chance to hopefully get the help I need to be able to work and keep a job. But I think it was probably the first time they had understood a bit what HFA's can go through and that our challenges can be just as real and scary to us and their LFA's kid's challenges are to them. I have seen them again at other things and they have been really supportive of me and very nice to me since then. And I, in turn have been very supportive and nice to their kids as well.

I think it is great to be able to have open dialogue where we can share what we all go through and see each other's perspectives. I think that can be very helpful and go a long way. One thing I love about WP. And I do miss KOR very much as well. Does anyone know how she is?

I have a friend at Special Olympics who is legally blind. But she is less blind than my relative and she is able to live independently and travel and basically manage her life without a lot of outside help. I would never be angry at her or tell her that she is not allowed to call herself legally blind because my relative is more blind and needs more hands on care. I also know people who have very small paralysis in some of their digits. I don't get angry at them and say, "you can't claim partial paralysis" because my relative is more severely affected and needs more care and more help. If I did that, people would say I was nutjob and would be in an uproar about it.