This is really important blog. thanks for sharing

This is the AUTISM I know :

http://www.healthnutnews.com/autism-researchers-concerned-tragedy-autistic-girl-louisiana-may-glimpse-second-crisis-care-coming/

Newsweek ran an article in 2012 entitled, “An epidemic of special needs kids heads for a crisis of care”. In the story, author Michelle Cottle described that we currently have a crisis of care, particularly for those with autism, as kids age out of the school system. As the population continues to grow, with no end in sight, our health-care, education, and social services systems have a heavy burden and strain put on them that we are NOT prepared for.

But that was in 2012 and the second crisis in care is just starting to reveal itself; what will happen to autistic kids when their caregiver parents die. This crisis may potentially be even worse than the first.

Recently, a 22-year-old girl with autism in Louisiana ended up living with distant relatives when her mother died. And the article reports, “Sadly, these distant relatives kept her locked in a cage outside for as long as nine months. She was abused and lost about 60 pounds during her ordeal, which ended June 30, 2016, when sheriff’s deputies freed her from her captors. After being evaluated at a local hospital, she was placed in the care of the Louisiana Health Department.”

Ciaparker, your examples are interesting. I am now having great difficulty word-finding as I get older and my Aspergers merges onto Alzeimers. Strokes can be major, severe strokes, or mild, mini-strokes, and they can effect people in several different ways, but they are still strokes!
Any moderately intelligent police officer ought to be able to spot if someone is completely unable to speak, and realize they have a disability. But if an Aspie misunderstands a question (and let's face it, the police set out to trip people up), or if they say the wrong thing, it can land them in serious trouble. I've been told by someone working in the autism field that there are many autistic people in prison who are innocent. I still think these are the same condition.

Patience, and Ciaparker. I'm sorry but Asperger's is not a social disorder, and those of us with it do not use language very well, or "normally". We use language very idiosyncratically which leads to no end of misunderstandings both ways. When it's said that we can't do social language, it doesn't just mean for socializing but for any situation where one has to interact with another person in anything other than a situation involving technical "jargon", for example, science, engineering, architecture, music etc. This would include interactions with officials, police, salespersons, neighbours, doctors and any other service providers. This is not an emotional problem, but a different way of understanding verbal meaning. It could also be one of the reasons why "lower-functioning " people can't understand requests, and can become so frustrated.

This topic may not be exactly on point for this topic, but many people read all of the topics and all of the comments. So here's the information:

There is an organization called ProPublica; they are investigative journalists. There is a request for stories related to mistreatment of a child by way of restraints.

They say,
"Do you know a child who has been forcibly restrained or secluded at school? Help us investigate by sharing your story.

https://www.propublica.org/investigations/

I once listened to a program that described how the DSM gets to what it is. A bunch of psychiatrists and psychologists get together and they talk things over. I was really surprised that, at least by what I heard, there was no input from parents of autistic people as to definition. The club is made up of an illustrious group of people who, in general, have no day-to-day (24-7) experience.

The DSM should reflect how different one autistic person is from another. Aspergers should be treated as part of the spectrum, and yes, it should be thought of as a high-functioning variety. But to distinguish one from the other nobody should ever say one form of autism is preferable to another. The type of anguish going with autism can only be perceived by the parents and siblings who are wondering from day to day what comes next.

It is always good to step back and wonder how we would look at a situation if we had never heard of autism and how we would perceive that situation if it required us to look from the outside in.

It is interesting that there are so many commenters believing that the Potato Part is a troll or not a real autistic person. Where does this certainty come from, that makes one person autistic and the other one not? You cannot tell one autistic person from another unless you have gone through a certain amount of experience. I know my version. And my comments come from what I know. Most times you wouldn't even be able to tell whether a person is autistic when you walk past them in the street. Just looking around to see what you can see, simply isn't good enough. But when anyone claims to know autism, that person has to include the whole spectrum. It includes vile language and it even includes violence.

Benedetta,
I guess they should divide the PDD-NOS into those who can use language fairly well and put them in with the Asperger's people, and those who can't and put them with the autistic. I think the ability to use language is the extremely important factor which separates the differently-abled from the disabled. If you can't use language to communicate, you're not going to be able to live comfortably, safely, or happily in society. And it would prevent Aspie's from whining about how THEY'RE an extraordinarily important segment of the autistic population, even though they can use language to communicate in speech and in writing fairly well.

Dan, Thank you for becoming involved with the tragedy of autism, and working with a parent, Mark Blaxill. Tracking down and following Kanner's original patients is a most valuable contribution.

Jenny Allan, Thank you for your comments on the language disorder of autistic children, especially from your vantage point as a teacher.

We all hoped for a cure, then realized most of our children continue to need help after special education ends. My son just turned 54, and he still needs help. The asylums have been shuttered, but "community" group homes are the new snake pits. I am old now, living in a retirement community, but still I am scorned for putting my son away in a group home. He would not be appropriate for the retirement community where we live. I have now suffered 50+ years of blame, shame, and disdain. My response is raging anger. Sorry.

Language disability is the most serious problem for children diagnosed with autism. Aspergers, or whatever later "social disorder" is something different. Neurodiversity does not include children who had difficulties learning to speak. Research is needed to identify the brain damage caused by asphyxia at birth, prenatal exposure to valproic acid, or encephalopathy caused by vaccines.

thanks jenny for the thoughtful comments. just to add that publishing the parent's comment certainly doesn't suggest we condone it and i tried to say that explicitly. you might know that callous disregard opens with a mother taking her child to the top of a bridge abutment and holding his hand while they jumped to their deaths. we have since had several graphic examples of this happening. so to acknowledge the reality of how some parents feel is part of the conversation. but no, murder-suicide is very bad karma or whatever your tradition would choose to call it. it is not a way out, i firmly believe. kim has written eloquently on this ... we need to affirm that no one has our ok to make a choice like that -- as much as we empathize with the difficulty they face. they need to reach out and get help. -- dan

Dan:

a person that is not a parent of a kid with autism and still sees this issue as clear as you do - is a genius.
I promise you that I was so stupid that I watched a lot of vaccine reactions and could not put all these incidences in the one basket of vaccine injuries where they belong.

The rest needs to take deep breaths here - because what you all are mad about is hardly worth a - well it is worth nothing.
I hate to use Jake as an example - but he is a fine writer.
I was cleaning my son's room a month ago - and ran into - some of his writings!!!!!!!!!!!!!!! OH, gosh - he is more than capable of writing complex, complete stuff. I did not know. The human mind is a complex thing. And more the shame if it gets injured by a bunch of money hungry, changing data CDC - and the rest of the ilk involved in profitable medicine and federal agencies.

Save your anger and direct it to the right source.

thanks hans. i have a clearer picture now of where you're coming from. it's true i'm not a parent of an autistic child, and if that's a disqualifier to the majority of our readers i would be happy to bow out and leave the battle to you. best, dan

Hello John - You are missing my point. I am well aware autistic persons can be capable, even talented authors of 'complex issues' , as long as those issues are tangible subjects. My Grandson is studying accountancy at University and is doing well, including written reports and assignments. He is as talented as the 'Rainman' on numerical skills, but we won't talk about my abortive attempts to help him with algebra when he was at school.
I could say a lot more about Potato Pert's comment, which is chock full of 'subliminal' messages, aimed to subvert:-
"AoA hurts autistic people"
"AoA makes it seem like the parents are suffering when their kids are autistic. That's complete bullshit."
“Those parents are the ones trying to kill us in an attempt to ‘cure’ us. It is definitely very nice to see that we are hated. "
Etc Etc Etc -This is the 'stuff'; of spin doctors, trolls and shills. My Grandson doesn't do 'subliminal' and is perplexed by sarcasm and innuendo. I can only repeat the mantra of Joseph Goebbals.
TAKE CARE
“If you tell a lie big enough and keep repeating it, people will eventually come to believe it. The lie can be maintained only for such time as the State can shield the people from the political, economic and/or military consequences of the lie. It thus becomes vitally important for the State to use all of its powers to repress dissent, for the truth is the mortal enemy of the lie, and thus by extension, the truth is the greatest enemy of the State.”

Jenny

Again, I don't entirely agree. I think there is a range of impairment and cases are very different. We even have people writing here may have ASD (certainly claim to) who write complex things.

Hans, Barry

I completely disagree. I have met many verbal autistic people and this is well within range of some. I supppose like all sorts of messages we receive it may or may not be truthful but there is no good reason to presume bad faith on this occasion. We used to get lots and lots of mail from people, for example, who claimed to have autistic children despite being non-vaccinators - it wasn't so much that the claim was impossible but they never explained why they were non-vaccinators, or what their interest was. But actually I haven't seen one of those for a couple of years so I assume the troll fraternity have stopped trying to push that one. I guess it may have been me who decided not to post one of Barry's comments - I wasn't sure whether it was fair. If you are going to call someone a liar (even someone who is not identified) you perhaps ought to have reasonable grounds.

Barry and Dan, I've posted here before and describe my 25 year old as high functioning. He would have been perfectly capable of composing a rant like the one from potato part. When he is angry he can fixate on something and go on and on. In complete sentences and with punctuation. I truly hate to complain about our difficulties compared to those of you with more severely affected children. But my son's struggles are painful for him because he desperately wants and tries to fit in.

**************

Not sure if Dan is going to censor this post, like he did my last one.

But sorry, still not buying that Potato Part has an autism diagnosis.

And to be honest, not believing that you are who you say are either.

Jenny Allan, I would concur with your view that we are being played here. Groups like CZ Associates have more than enough PR pharmaceutical money to put out this kind of faux outrage stuff. It's odd (never mind convenient) that they (neurodiverse and or shill movement) has chosen to vilify environmental damage. I mean is it really so much preferable for someone who has autism to state that one has genetic problems? Look at the nature vs nurture debate and see how people try to mitigate against this (headstart etc.). Also, there is little debate that some health interventions (gut improvements) seem to help some autistic symptoms. All this faux horror at being environmentally damaged is simply crafting with no real substance to it.

I've been reading AoA for a few years now and I have always been struck by the affection and respect the parents who post here display for their autistic children. And I'm aware that I often don't feel such warmth and respect for my own child, even though she is, well, sort of perfect. It's the "sort of" part that's the problem: she should be perfect because she has no reason not to be, especially given all the close monitoring and good advice that I'm providing minute by minute. I don't think that I'm an unusual parent for these times. I think I'm pretty usual.

A couple of weeks ago I decided that my mantra would be that my kid is a good kid, she's doing her best and that being 15, she has a 15yo brain. Resentment and anger evaporated because, of course, I had been trying to cure her of being fifteen and that wasn't going well.

But I didn't pick up my parenting style from AoA. The parents here accept and appreciate their children in a way that awes and humbles me.

From Potato Part:-"“I accidentally ran across Age of Autism. Age of Autism is the type of stuff that actually hurts autistic people. This type of thing makes it seem like the parents are suffering when their kids are autistic. That's complete bullshit."

I have quite a bit of professional experience teaching 'special needs' youngsters, including autistic teenagers, but mostly I taught children who are neurologically typical. ASD covers a very wide spectrum. So called 'high functioning' persons with autism get labelled 'Aspergers', although as far as I can ascertain there is no hard and fast definition of 'Asperger's Syndrome.

Patience (Eileen Nicole) Simon, described her autistic son's speech and writing style, very similar to my own Grandson's, a clever lad in his twenties, but still autistic. There's no question in my mind, when reading the piece by Potato Part, this was written by a neurologically typical person.

Are family residences being considered for places like the Autism Trust? Maybe some peace of mind could be found if parents were able to reside with the community of people that will care for their loved one after they are gone? Maybe the way we as a culture of people could revolutionize the way we care for our elderly and our injured?

Two kinds of autism must be distinguished from each other: (1) autism diagnosed in children who are not learning to speak normally and (2) autism diagnosed in children or young adults who have problems interacting with other people.

My son is high functioning, but he was almost 6 years old before he learned to speak. He still speaks like a foreigner, and he writes like a foreigner. He has co-authored two memoirs with me (available on amazon.com, Autism and the Inferior Colliculus, Books 3 and 6). His writing is not anything like that of Potato Part.

My son's language problems are the result of an auditory processing problem. As he puts it, "I can't understand people who speak a mile a minute."

Tomorrow is my son's 54th birthday, and, yes, my life for 50+ years has been a matter of grieving. His autism was from head injury and asphyxia at birth. No one can make me be more graciously accepting of what happened to him.

Autism has many causes; all injure brain systems in the same way. I think it is brainstem systems, especially the auditory pathway.

Thanks Dan always thought provoking.

The strange thing about both these comments is that firstly,the potato comment I have never met anyone in real life, who has felt in this manner, and only found them trolling the internet.
Secondly the suicide pact comment, I have only ever met parents like this in real life and never openly on the internet.
Strange that they both appear together as I have never experienced this in real life.

Apart from that ,"you do what you can do", is my golden rule when thinking about myself,or other parents with disabled kids and no two cases are the same.

Bless them all.

MMR RIP

Barry I am not so sure this person wound not have an autism diagnosis.

Yes, a toxic world, with some toxic thinking, and always, these days, the duopoly discourse; the obligatory for or against, without explicit understanding of what is supported or decried, and commonly a refusal to identify problems and search and implement solutions.
Sometimes the human spirit can rise above it to change course, and that is the hope I hang my hat on.

Dan- Yes I agree. We have to treat comments as coming from 'bona fide' persons or sources unless certain they are from false personnas. This is a difficult task for moderators, but most forums have check lists for what is and isn't permitted.

Campaigning internet sites and forums inevitably get a few commenters who seek to bring the sites and/or the managers and contributors into disrepute. Mostly they use a 'Trojan Horse' approach, pretending to be sympathetic to the causes, but post controversial and sometimes extreme opinions and suggested actions designed to provoke criticisms and outrage.

On this side of the ‘pond’, There has been a small recent ‘victory’ achieved against one of these ‘self appointed autism advocates’ called Fiona O’Leary, operating from the Republic of Ireland, but writing defamatory blogs on Facebook and elsewhere . This woman claimed to be on the autistic spectrum. Her ‘targets’ were virtually everyone involved with autism campaigning and awareness, in particular IAA, Ireland’s biggest Autism Charity. Somehow the Irish Press and Media provided a ‘platform’ for this woman to spout her venom. The charities and person’s slandered fought back with lawsuits and I signed a petition against ‘false advocates’. Anyone can set themselves up as an ‘autism advocate’ for good or evil. O’Leary has much in common with Reiss, Deer and the rest. I suspect the news outlets got some ‘inducements’ to publish her venomous rubbish.
http://www.emmadalmayne.co.uk/mms/fiona-oleary-fighting-for-a-brighter-tomorrow/

https://www.change.org/p/donald-macintosh-stop-unqualified-advocates-in-ireland-0942bc88-7772-4295-9887-ef02bc25439f/u/17870687?tk=HHS0HuwCcUF6AJ3av6yGYc8JCuFMZvKaIswL5n2NqFI&utm_source=petition_update&utm_medium=email
From Above:-
“Since O'Leary came on the Autism scene just over 2 years ago, professionals, parents and charities serving the Autism community have suffered ill-informed articles in the Irish and wider press, hate campaigns and defamation which has affected service provision for Irish Autistic Adults and Children greatly. O'Leary has alienated and abused the very community she purported to serve with her self-serving publicity stunts and antics, which are gradually coming to an end as the media suffer the backlash of High Court Injunctions, Legal actions and public complaints on the back of fraudulent tips and information passed to them under the guise of O'Leary's 'Autism organisation' ART (revealed as no more than a Tumblr page)”

“I will preface this with the fact that I am autistic.

“I accidentally ran across Age of Autism. Age of Autism is the type of stuff that actually hurts autistic people. This type of thing makes it seem like the parents are suffering when their kids are autistic. That's complete bullshit.

“Those parents are the ones trying to kill us in an attempt to ‘cure’ us. It is definitely very nice to see that we are hated. I wanted to say thank you. Thank you for helping the content that hurts autistic people. Thank you for putting out content that gets autistic people killed. Thank you for actively harming autistic people. Thank you for reminding us that we are thought of as burdens.

“Thank you for making it harder for autistic people to live. Thank you for the content that makes autistic people suicidal. Thank you for making our life harder. Thank you for making our life worse.”

***************
If any of our children could write four consecutive, error free paragraphs like these.... none of us parents would even be here.

Why are you even repeating this nonsense? Any parent here will tell you that it was not written by someone who received an autism diagnosis.

hi jenny, it's always possible we're being played but it would be hard to respond to anything without giving them the benefit of the doubt. i certainly am familiar with real people who take both those positions ... dan

From above:-
"Obviously, premeditated murder-suicide out of despair for the future of one’s child, as this parent is promising, is not OK. Autistic people like Potato Part feeling suicidal, or at least that his or her life is made harder and that they are hated after reading sites like ours, is not OK."

Assuming of course, these persons are REAL people, and not masquerading as hard pressed parents, or depressed, potentially suicidal autistics, in order to make Dan and the rest of us feel bad. I once responded to a 15 year old 'autistic girl 'on a social media site. She was denigrating Andrew Wakefield for the usual stuff, and like Potato Pert, promoting autism as a positive special thing, I was very gentle with her, whilst pointing out her comments regarding Dr Wakefield were slanderous untruths. I found out later these comments had been posted by a 45 year old woman, who regularly 'trolled' using a variety of names.

My message to Potato Pert is simple. If you are real, then you are in dire need of professional help and emotional support. Please seek the help you need. Age of Autism is just one of many internet sites dealing with autism issues; the main objectives are those of support, to parents and their children. Comments which are 'hateful' are invariably moderated out, as yours would have been, if Dan had not used it as an example.

The parents stating their intending to kill themselves and their autistic child sound like another example of 'trolling' by impersonation. Again no chance of escaping moderation. Yes some parents HAVE committed suicide and taken their child with them. Root cause analyses usually uncover failures in social and medical care help and support, which have driven such parents to these depths of despair. I cannot condone such actions, but do not feel inclined to harshly judge these parents either.