Do all parents with severe ASD children want a cure?

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The "magical window of opportunity to gain language" is still touted as slamming shut at age 5. This is a LIE that benefits no one but the payors of services for kids with challenges.

I ecently met a Mom (online) whose son was completely nonverbal until age 14 but now, just 7 years later, works 30 hours a week at a "regular" job. She is a source of great comfort for me, and keeps me going when the naysayers get me down. This kid isn't an isolated example of a late talker, so I know that communication can emerge at any age, but the overwhelming pessimism of some "experts" can discourage the most optimistic and strong of parents.

I think the first order of business for parents whose kids are diagnosed with very "flattering" labels should be to take the "experts" with a HUGE LUMP OF SALT. I wish someone had given me this advise two years ago when my son was first "diagnosed" as being "beyond help".

I am not exactly sure what you mean by "flattering labels" but honestly, unless you are in a place flush with both cash and concern, any parent has to be wary of arguments meant to reduce or eliminate services. It ranges the entire gamut from "beyond help" to "Oh, your child is doing so "well" and doesn't need help." It all has to be backed up--and if it isn't (or can't be b/c it is untrue)... watch out.

Schools don't necessarily want to spend either time or trouble if they think they can get away with it.

That was my point, actually, although I would include insurance companies and the State in the mix - basically any payors of services.

As for "flattering labels", I was trying to be sarcastic. Any label by any of the above entities that is applied with the intention to reduce - preferably eliminate - services is a suspicious one, IMHO.

Thank you cyberdad. Although I haven't posted as frequently over the past few years, I am a long term member and always enjoy your posts.

Currently my daughter is 7 and not functionally verbal. I recognize that severe receptive and expressive language delay is not a static diagnosis/condition and that even those with most severely affected can learn to communicate electronically over time (over a very long, grueling period of time with considerable time and resources being utilized), like you I am a part of this journey and it is something we work on daily. However, I wouldn't say that the label (non-verbal, non functionally verbal, severe expressive and receptive language delay) is erroneuously applied to our kids, but I think the experts present the label as static, when in fact it is a dynamic, evolving process. But I think those of us effected by the label face some unique challenges and with respect to the sub forum, I'm well aware that it has been debated in the past and of the arguments on both sides. I appreciate the sticky threat in the parents section, however, when I am looking for advise on an issue unique to those with speech delay I find it cumbersome to search thru a 106 page tread to find it. I stand by my opinion, this site would be more user friendly, inclusive and practical for parents of 'severe' children (The OP's label, not mine) if there was sub forum. Since I last visited the site, I see a sub forum has been added for autistic members of the LGBT community, it's a wonderful development. I don't see why is has to be so controversial to add a sub forum for the 30% of us impacted by distinct challenges associated with the dynamic, evolving, label of non-verbal autism.

Hey all,

Please cast your vote of support for such a subforum here :

http://www.wrongplanet.net/postp6032588.html#6032588

Thank you ! !

Oh, thank you so much for posting this ! OF COURSE it is helpful. I will try it when he is eating or maybe when he is in his car seat, too. Might work ! Thanks again !

I agree I think my son is listening in and attending when I read and he looks out the window and Stims with his straw. Occasionally he will glance at the pictures other times lean right in and pay the closest scrutiny. It certainly beats the situations several years ago where his interest in books was tearing them up and eating the pages.

I've never understood people who want their child's autism cured. I think they are just mixing up co-morbids with their autism. Mental impairment is a co-mormid, not autism. By saying they want to cure autism they are saying that they wish that they had a different child. I personally get frustrated by my dysgraphia and written communication disability because they make university difficult, but even things like ADHD I find has more benefits than deficits. My autism is what makes me who I am, not something to be cured, and if I had a child with severe autism I would love them the way they are, not wish they were someone else.