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April is Autism Awareness Month. Yet I can't help feeling frustrated as we pass out ribbons and light bulbs. Instead of asking "What is autism?", we should be asking "What can I do today, right now, to help kids, adults and families affected by autism?". Read More















Moving Beyond Autism Awareness to Action
I could not agree with you more. It seems everyone has heard of Autism but what are they doing about it? Unfortunately, even the best non-public placement schools specializing in autism spectrum disorders are teaching the "No Child Left Behind" curriculum and children who cannot even take care of their own toileting needs are being taught Shakespeare and The Canterbury Tales. It makes no sense! My twins are 17 and despite our many meetings with school they still insist on teaching age/grade level academics for kids that function at 3 to 7 year old levels. It is so frustrating and it is a waste of their precious learning time and tax payer dollars.
support group
I have been attempting to start a support group on facebook for parents of autistic children to comment and give helpful tips that work in their homes. It is listed under the causes section of facebook as REAL moms of autistic children. I feel that we are going to have to work for ourselves. I am tired of seeing autism awareness group. I think we are all aware of autism. Having two children with autism I am more aware than most. If no one is offering up a cure than we need to get together to discuss how we can make our children as productive and happy as we can.
Support Groups
Hi there - Thanks for commenting about this...I so agree that support groups are SO important for us. I belong to a parent, local/county level, autism support group which has been great. You get tons of info on all kinds of things from parents. It is invaluable to be able to share experiences and get recommendations and also be able to meet other parents in my area. I think ASA does a great job w/support listservs as well. I am guessing they are different in each state but the one in Philly does a great job of keeping parents in touch and also up on current issues. As far as F/B, there are several groups on there, and I noticed a lot of the family interaction occurs in the discussion threads. Also, Circle of Moms has a nice section on their site for Autism-Asperger moms. Good luck with your new f/b parent group! It is important that parents have places to talk to other parents. Thanks for your comments! :-)
support
I found a great new support site from Temple Grandin Facebook page called www.autspot.com
Moving Beyond Autism Awareness to Action
Kym, you are right on target as always! Enough with the "awareness" already...it's time to do something about it!!
Action is great, but newsflash: the public is still unaware
I've noticed that parents of older children who have been in the ASD community for 10+ years seem to not realize that most people are still completely ignorant about ASD. Understandable if you and the people surrounding you have been educated extensively. Despite semi-accurate pop culture references and general information moms-to-be may come across while on parenting sites, the word is not out and people mostly have no idea what ASD looks like or where to go once they have a diagnosis of ASD. Most people without a child on the spectrum have NO idea that the physically "normal" looking children they see tantrum in public are not misbehaving, but reacting to sensory issues and panic attacks. Children are still diagnosed, for the most part, a year or so after first symptoms appear. Awareness is still SO important for this community. I usually shy away from do-nothing awareness campaigns... but ASD NEEDS better awareness!
Awareness vs Real Understanding/Compassion
Many people are very aware of autism BUT do they really understand it?...it is a totally different expectation. If they are aware, do they even care? Do they want to help do anything about to help families with autism? Some yes and some no. A deeper level of understanding is needed beyond awareness. And action is really needed this month...we have to speak up.
I would love to live in a world where people would stop judging...I have been there when my kid was younger tantrumming in a store and people stare or worse, would say something. There is a difference between "Awareness" and "Compassion". I would LOVE to see more compassion but it just is lacking for a lot of folks.
Truth
The main problem is that every public official, public employee and do-gooders who run autism orgainzations refuse to tell the truth. (Some of them don't know the truth.)
We have to organize and jam the truth about how mercury causes autism and how chelation cures it down their moronic throats. We can't ever step back and consider their stupidity and dishonesty as a mere difference of opinion.
I had a son who was one of the worst cases of autism you can imagine, a complete "vegetable", "zombie", "brain dead", whatever nasty term seems appropriate. I use these terms to highlight the true horror my son faced. There is no sugar coating how intensely horrific autism can be.
I have him halfway cured now, maybe more. He's a happy kid. If I had listened to the simpletons who gave me advice from all of the social service agencies and the medical industry, my son would still be living a nightmare. I chelated him, something all of the above named idiots advise against. All of the therapies they endorse were 100% useless and none of them will accept the fact thata I, and thousands of others, have helped our kids by removing the mercury from their brains with chelation.
That needs to be the first thing parents of newly dx'd kids learn, that a real cure does exist and that it is very cheap. We can't sit idly by and let these moronic public employees continue to prevent autistic kids from being cured. We have to attack them publicly by writing about their rank stupidity and shpowing all of them for the fools that they are.
moving beyong autism awareness month
Well Kymberly hit the nail right on the head. I can feel comfortable and familiar with most of the things she said. Especially in the middle portion. Talking to our represenatives in the key to get things started. But I learned to talk to as many people as possible. You never know who can help you or how you can touch someone else or educate each other, etc. Unfortunelty due to bad circumstances, I have become a self educator and activist. I advocate for my son who has special needs. The school staff and students abused him, and I was untold of most of it, and when I was, everyone thought it was ok. Because kids with behavior problems that are in federal level 3 settings can get restraints and seclusions. Well I never knew. And being disabled myself, always made it very clear to keep me on top of all his care no matter what. I feel they took advantage of me and my son, our economic status, or envirnoment- by not informing us of proticol. Cuz I clearly did not sign up for that nor would ever encourage that for him or the other kids. I think kids in special ed deserve just as much as the rest. After no changes, and continued results of maltreatment and no education, I decided to pull him. And I filed a complaint. Now I am getting the run around with IEP and transfer to a new school or program. the school says even though the doc said he has autism doesnt mean they have to, which means he wont get ASD therapy/education, but instead stuck in a stereotype and judged with emotional and disruptive behvior disorder. I am sorry for those kids and there parents, that may also struggle. How ever, I want my son to have the same rights and freedoms and chances as a normal kid or wealthier family. I try to share my stories even if it causes "trouble" because I feel it opens up more eyes. If I did those things the school did they would of called CPS on me. Why does the law protect them? He has been out of school now for over a month and are threatning me with truancy. Yet he could of died there and is scared to go back, but the school has no new or better options elsewhere.
I belong to a school district
I belong to a school district that took my 13 year old son's 504 plan because he did well and now because of that his grades are going downhill. They claim he is getting FAPE. I am looking to start a group on Facebook for parents like me.
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