Do all parents with severe ASD children want a cure?

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Truthfully, I could understand your opinion vis a vis the matter at hand--whether there should be a "cure" for autism. I could understand that you've been through the trenches, and that you are weary (I'd probably be weary, too). We just have somewhat of a difference of opinion. Life is like that. We can't always agree.

I haven't been totally following this so this may be completely off topic but I feel the need to say it anyhow. Directed specifically to Hismom:

I looked at some of your previous posts to understand where you're coming from and I think I learned that your son is 4 (do you have an older child too?). If he is the child you're referring to, 4 is still REALLY YOUNG!! ! Seriously, four years old is not old enough to determine that he will need to be institutionalised. For classic autism, non-verbal at 4 is still fairly 'normal'; it doesn't mean your child is doomed! I know loads of people whose kids were really low-functioning at age 4 who are now in mainstream school. One of my own kids was functionally non-verbal until he was 10. He's 12 now and he's getting there- he's got some language skills now (still delayed but he's still learning too). Even my nearly-15 year old son who is severely autistic, non-verbal, very limited interaction, etc. has come a REALLY LONG WAY since he was 4 years old. So I just want you to know that if your son is only 4, it is definitely not too late for him.
(BTW this is separate from abortion topic and cure topic. I just thought it was important to note).

I apologize for going off topic. My bad.

How can an end to something as great as human life be pleasant ?

Thank you for your words of hope, Holland. I truly appreciate that.

My son will be 5 soon. He does not say ONE WORD. NOT ONE WORD. His receptive language skills are pretty low, too. It is just so hard to see past the here and the now, sometimes.

Last edited by HisMom on 17 Apr 2014, 6:51 pm, edited 1 time in total.

It could be. When the person knows it's time to go, and is surrounding by his/her friends. Then the person dies in his/her sleep.

I, myself, don't want to die---but, alas, I know I must sometime--and I want it to be as pleasant as possible.

There are many hopeful stories which arise out of autism.

By the way, I didn't say one word until I was 5 and a half.

And here I am arguing

I was severely affected neurologically, to the point where I would scream all night many nights.

My youngest (who now talks) didn't either at that age. Then one day he did say a word ("ball") and he started saying more words but he'd only repeat after you, so they told me it doesn't count because it was meaningless. He did that completely echolalic thing for 5 years (like I said, until he was 10). Of course in that time period I thought that was all he was ever going to do- his therapists that was all he was ever going to do. ("What do you want?" "What" "Apple?" "Apple" "Yes?" "Yes" "No?" "No"... Not helpful). And then one day he just said a word on his own. I almost died of shock. Because who would have thought at 10 he would get it? I was told 7 years old was the absolute cut-off for language acquisition. That's obviously not true. Anyway, point is, don't give up yet. I wish you luck

I second Holland.

Oh, wow ! !! I am forever impressed by you resilient folks ! How was your receptive language before age 5.5 ?

Truth be told, I am more worried about his receptive language & cognition than his expressive language. I think if he could understand language, he would find a way to communicate. I am no longer as hung up on speech as I used to be, although he does have the sweetest little voice on the Planet when he does decide to hum !

I think he has severe MERLD, complicated by apraxia and autism, and this is all topped off by an abnormal EEG

But he smiles socially ! !! ! The little man is a mystery... And I now suspect that my husband may be on the spectrum himself. There is something a little off about him, too, it ONLY took me 15 years to figure that out ! !

Thank you ! !

He has said words before, then lost them. At age 23, he said his first true words, and kept using them until about age 27 months.

Then NOTHING until age 39 months, when he began to use escape words such as "bye", "done" , "no more" etc. The last word he said was last March, and it was "done". Then I pulled him out of preschool because I suspected that they were being mean to him. They also insisted that he was intellectually disabled and wanted to send him to a program for kids with "brain injury". I began to homeschool him and got him on medication for his abnormal EEG.

There has been some progress, but the words won't come. He may occasionally say "come" or "go" (when he is in the bathroom) but that is it. He has a lot of LOUD VOCAL STIMS and hums but no more words. And his receptive language is horrendous. I may as well be talking to a darn wall. He has some prompted signs, but nothing spontaneous.

I don't care if he doesn't talk, I just want him to communicate - ASL, writing - I don't care. I just want him to communicate, so I can have a relationship with him. I don't think I am asking for a lot... It is awful when you can't relate to your own kid

I don't recall if you mentioned it: but have you done ABA with your son? Intensive ABA, like Lovaas did?

I know it's very controversial, and it seems harsh--but if it will work on your kid.......

I would be utterly heartbroken if I couldn't relate to my kid.

Last edited by kraftiekortie on 17 Apr 2014, 7:22 pm, edited 1 time in total.

He gets intense ABA now and it has helped with compliance & fine motor skills, but not at all with receptive language or cognition. He can do simple shape sorters and puzzles now, but not more complicated cognitive tasks. I just don't know how to jumpstart receptive language ?

I've heard it stated many times that delving into a child's "special interest" might provide a pathway into the child.

His special interests are music and visual stimming. A LOT OF BOTH. ALL DAY, EVERY DAY.

What type of music does he like?