"Autism is just a doctor's way of saying...

southernbubby

Mon, Feb 18 2019, 7:25 pm

aricelli wrote:

Southernbubby and OP, so right- however since we are all lumped together, when we saw your title we thought you were referring to our children as well! And thats why so many of us with varying degrees of “so called” autism responded- we had no way of knowing what you meant, I’m sorry if I inadvertantly hurt you in any way by responding

You didn't offend me. To me HFAs just have unique personalities but I am sure that for them it's not easy.

daagahminayin

Mon, Feb 18 2019, 7:33 pm

imorethanamother wrote:

I have a son with severe autism. We had him in a full day ABA program by the age of two, along with speech therapy and occupational therapy. When his 9 hour day was finished, we would add more on top of that. He got gymnastics and music and art and yoga and literally everything we could throw at him. We davened and went to gedolim and took on chumrahs, etc. None of it really changed him in any way. He's made strides, sure, but teeny tiny ones. His future looks pretty bleak.

It is what it is. Some gedolim were matter of fact about it, and we were so sensitive at the time that their responses were very painful. Others cried with us, and one even gave us a book that he wrote about these children.

I don't believe that these autistic children are "tzadikim" - I don't think it works like that. I think that bechirah and hard work is what makes you a tzadik. These children are without sin, but not tzadikim. I also resist the attempt to make these children into prophets of some kind. They're not talking to angels or the like. I remember telling one gadol that if we are defined as human and as tzelem Elokim by the fact that we can talk, then what is he? It sparked an interesting discussion about what it means to have a neshama, and where is it, and if he has one, etc. I won't get into it here. But I was left with this feeling that his yiddishkeit was something to be taken for granted - no one seemed to care if it existed or not.

He then turned 13, and we brought him to Israel for his bar mitzvah. Against my wishes, really, he was given an aliyah. It was a debate whether he was able to get one in the first place (one compared it to a woman getting an aliyah).

But there it was. It was like something had come over him, and he was present in the moment. He was alert. He wasn't flapping his hands in front of his face and making funny sounds and wandering off in his own world. He had this incredible smile on his face. He said the bracha (okay, it was a bit mangled), and I will never ever ever forget how he looked. He looked at all of us, in turn. He hugged us. And he looked directly into the sefer Torah and smiled.

So daagahminayin, there's your answer. That's the glimpse we sometimes get, seeing that there's a soul in there.

Wow. That’s incredible! Thanks so much for sharing. May Hashem grant you many more such moments, and may your son live a happy, healthy, and fulfilling life.

amother

Wine

Mon, Feb 18 2019, 7:58 pm

amother wrote:

This is op. I think she means, and I agree, that labling a person who cannot speak, is not toilet trained, and needs a carer with them for all of their waking hours and a nerdy scientist who only ever talks about chemical valencies and who has a great difficulty sustaining relationships and is irritated by fluorescent lights with the same label - autism - is pretty silly.

I understand how on an emotional level it’s jarring, but if you understand autism as a spectrum and understand there can be a long way between high and low functioning it makes more sense. For what it’s worth I agree that having a separate category of aspergers made sense though.

And to op, what that person said was rude but autistic people do have neurological differences from non autistic.

southernbubby

Tue, Feb 19 2019, 7:33 am

amother wrote:

The struggles of a child/ family with HFA are at least as huge as those of lower functioning. They are different struggles because you cannot contain and control the actions of an HFA like you can in a more severe case.

Our grandson is only controllable at night because he has to take sleep medication so that he won't be dangerous to himself and others when the rest of the family is sleeping. If he decides to run, he is not afraid of traffic. He can also become aggressive to the younger kids as well as that he reaches into his soiled diapers.

By contrast, we know a young man who who has HFA. He is cognitively impaired and can't really hold down a job but he is fun to be with, sings beautifully, and can carry on a conversation. He is loud and socially off but very likeable. He will always require someone to oversee his life but he handles most of his own personal hygiene (needs help clipping nails) and can get where he needs to be on foot or public transportation. I would not say that his family has it easy compared to a neuro typical family member but it appears to be a lot easier than managing my grandson.

aricelli

Tue, Feb 19 2019, 7:52 am

Southernbubby- you know what they say: if you’ve met one person with autism- you’ve met one person with autism- each one is different. There are those with hfa who arent nearly as docile.. no - he definately is not your grandson!!! I am not comparing!!
neither did we make up these classifications.
But being that these are the classifications, we gotta use these names until it changes.
Trust me- I’m also unhappy: perhaps my child should be called low functioning aspie instead of high functioning autism... that sure would make more sense! Here ppl think “he’s high functioning- he’s doing great!”

southernbubby

Tue, Feb 19 2019, 8:25 am

aricelli wrote:

I guess that when these kids grow up, they are at liberty to reject the labels if they no longer have the same severity of symptoms. The posters here who identify as autistic may have outgrown the term .

amother

Linen

Tue, Feb 19 2019, 10:46 am

southernbubby wrote:

I withdraw my precious statement about controllability. It was neither a well thought out nor sensitive comment.

Sending you and your family much koach.