thanks so much and share your dreams for your chidlren---it's especially ironic to me that, while I was in denial about Charlie's diagnosis in 1998 (he was only about 17 months old), my mother-in-law was the first and only person who had concerns about his development. I've always been grateful to her for that.

@Hai. Thanks for sharing your story. I really liked your story because you talk about struggling to be a good parent. And how you balance things out in your life doing the best you can to be honest and meet the needs of your autistic child.

I don't think it is about treatments or cures. There are books like Patience mentioned, and things parents do on their own like music or art because parents  are nurturing their child's talents.

 It about being the kind of  parent you want to be for  your child or any other child in the family. Nurturing a loving relationship with your child and their siblings; positive attitudes as much as possible and meeting the best you can their challenging needs. It's about having a balanced life. Doing your best is not the same as striving for perfection. Being a human being is more important than anything else.

But will society respect all human beings? I was so sad yesterday because families still get stigmatize for having an autistic son or mentally retarded brother. Even by people who volunteer to help autistic and mentally retarded.  I still have tears today! Even in the nicest cities, (our city is known around the country for the best place to live), people remember the past and don't want to hear about the good news. You are trap. If you answer their questions with happy news you get looks of shame and comments of disgust.They don't want your child to exist. There is no safe answer. It still hurts. But I guess I get to see the real people I meet. So I gain knowledge that others don't.

I love my child more than ever. I am so thankful my son was able to get a new start in a new city. He looks, acts etc autistic. But he is accepted on his own terms. Society needs to let she/he and his family be who they are. What would the world be without our children?

I completely understand your sentence "Even by people who volunteer to help autistic and mentally retarded."  Even being a parent, I do have good and bad days.  I learn to reminded myself that some of the behaviors of my children were manifested by their disabilities.  Their lack of communications make a simple problem becoming worse one.  That is why my wife and I work hard to improve their learning and communication skills.  It is not only for our own children but also for our own sanity.

@Hau, "Their lack of communications make a simple problem becoming worse one.  That is why my wife and I work hard to improve their learning and communication skills.  It is not only for our own children but also for our own sanity".

Good point, Hai.
At times I can see it is necessary for autism parents to be motivated for the sake of their own sanity. We have to be there for our kids and yet the challenges can be too much. Trying to reach our child during meltdowns and shutdowns. Trying to communicate with a non-verbal, agitated child. Ordinary things in life become a crisis because the child understands things differently than us. That was the most frustrating part for me.

 Doing so much as parents with little outside support and little resources. It is amazing that our children and us survived at home and in society .

I think I was channeling that notion of neurodiveristy and "doing nothing" when I wrote those words. I just hope we've done enough for Charlie.............. seeing what's happened to my MIL has Jim and me all the more aware of why we do what we do for Charlie; how doing this means that one has to go above and beyond.

I was thinking that when I was reading all these posts from anti-neurodiversity people. What they say couldn't be further fromt he truth.

Indeed.

The notion that pro-neurodiversity people -- autistic self-advocates and their allies -- advocate "doing nothing" for autistic children (or adults!) is rubbish.

It's actually worse than that: it is a pernicious lie that is spread by those who fear encroachment upon their hegemony, whether that be funding and policymaking regarding autism, control of autism organizations, application of reasonable standards of science and ethics to questionable commercialized "treatments" and "cures", or even what they as individual family members (sadly and incorrectly) see as a zero-sum game, a finite pie of benefits that they and their loved ones will get less of if disturbed.

When we question or criticize a particular intervention, treatment, or teaching model, we do so on the merits and demerits of the particular intervention, treatment, or teaching model -- not because we think nothing should be done.

And all too often the things we think -- and *know*, many of us, from personal and family experience -- will be helpful or even critical to improved quality-of-life for autistic people, are ignored by the mainstream, and *particularly* by those who make false claims about us.

Another false claim often repeated about pro-neurodiversity people is that we ignore the existence and needs of severely disabled autistic people.  Nothing could be further from the truth.  Many of those things we push for -- for example, AAC and its use to develop means of trusted, reliable, and respected expressive communication for autistic people who do not have expressive speech -- are more critical to improved quality-of-life for severely disabled autistic people than to many other sectors of the spectrum.

And yet another false claim is that all pro-neurodiversity autistic people are so-called "high-functioning".  That is patently false.  The board of directors, membership, and broader community of just one organization, the Autism National Committee (http://www.autcom.org), have many so-called "low-functioning" members who share pro-neurodiversity perspectives and priorities.  And there are many other so-called "low-functioning" people not connected with AutCom who have spoken out similarly.

And Kristina and Jim, for what it's worth, you have done a marvelous and thorough job providing Charlie with every opportunity that makes sense.  And I think, despite the ups and downs, that he has come a long way.

And I am sorry to hear about Jim's mother's situation.  I hope she is able to heal, physically and mentally.

@Phil. "And all too often the things we think -- and *know*, many of us, from personal and family experience -- will be helpful or even critical to improved quality-of-life for autistic people, are ignored by the mainstream, and *particularly* by those who make false claims about us". 

Powerful words IMO because it is all about quality-of-life. Exactly. We need to look at what families are doing for themselves from personal and family experience.

(IMO) We have stressed Research too much. I think research is important but it is slow and the person doing the research picks the question and the sample group. The research might not even be based on our child's diagnosis. I have never really seen any research on Childhood Disintegration Disorder, my son's diagnosis.

We need to use research to validate results. To know we are doing things right. Research will take forever to figure out all the things we need to know to help our kids. There isn't much research or books on teens and adults. There is still fear of the unknown in later years because there is no safety net and little published knowledge of what parents need to know.

What are we suppose to do- wait for research, wait for books or what? I don't have a close relationship with another family with an autistic child. How can I learn from someone else? Most of us are raising an autistic child alone. Some have family that are supportive. This blog by Kristina and Dora is most helpful in talking to other parents and not feeling alone. It was exciting to talk to a sister with a brother (who is a musician). I felt someone understood the challenges of having an older age sibling.

The only good knowledge I got about the later years was anecdotal stories from other parents who were put in a difficult position of having to make some immediate choices because of the situation they were in with their child without the benefit of published information. I also got great feedback from my brother/son. Great Teachers.

We need the anecdotal information Phil is talking about- personal, child and family experiences. Sometimes it takes more than one approach to deal with meltdowns, agitation, communications, social skills etc.

Some parents have figured out some positive ways to help their kids. I would rather not reinvent the wheel.

How do we get quality life for our teen/adult children?