DSM-V AND RE-CLASSIFICATION OF ASPERGER'S

What will this re-classification mean for you? 

A lot of people are up in arms, wondering how this will affect the resources they depend on from their health plans and education systems. The question also exists of perhaps many children and adults have been mis-diagnosed and now have to be re-diagnosed.

This question created many discussions. My opinion about this removal of Asperger's is that it's a simple tactical move to generate more reveneu for Psychiatry. Only the book sales of the new DSM, will bring some 6.5 million dollars in the pockets of APA. Hora!

Scapegoats are always available to be sacrificed. For the DSM they are the so called "Aspies" by those who hold them near and dear. That was a joke because just the "hold" and "near" might bring some chills to many Aspie-a-back. Mine for sure.

Some don't think that Asperger's syndrome and Autism are the same based on a neurological point of view. Others believe that Asperger's should not have been even related with Autism in the first place, because while Asperger's describes a disorder, Autism, describes a spectrum. Maybe Asperger's should also be seen as a spectrum like the schizoaffective disorder, another neurological "difference" which resides on a spectrum. Maybe Asperger's/Autism, OCD, ADHD, schizophrenia, mood disorders, etc. should all be lumped together as a "Neurological Disorder Spectrum". There are enough similarities between all of these disorders and the various forms of Autism and Asperger's. Then we can't deny that Autism and Asperger's have also too many similarities to be completely separated. 

There are also people who are starting to talk about "Aspie elitisism." As if Aspies are somehow better than Auties, as Asperger's is connected to normal and high IQ, while Autism is too often connected to mental disability and low IQ.

So, here is my argument.

As far as I am concerned Asperger's is Autism with speech development! Both the autistic kids and the Asperger kids, think and basically behave in the same logic manner, and need the same structured environment around them, etc., etc., etc. These are the many similarities the two share. 

Only, here comes the influence of psychiatry, because of the LABEL that Autism carries as a "severe" from that also means mental disability and low IQ, parents treat and bring the kid up in very, very, very different way than a kid that has early developed verbal communication skills as in Asperger's.
I have seen (severe) autistic kids develop into Asperger's-like kids (often called as high functioning). In reality these kids are autistic kids that were given the opportunity to bloom, to develop the dormant abilities that they have and they exist within all Autistics/Aspergers. When that occurs there is no visible difference anymore between the behavior of them all ("severe" autism, autism high functioning and Aspergers).

I am an Aspie and can understand and communicate easily with severe autistic kids, its as if I know how they also think, and when I respond the way they also understand based on this common logic way of thought, the communication flows, whether it is verbal or non-verbal/behavioral.
 

Autism is ONE. 

Asperger is the early verbal form of it, HFA (high functioning) the late verbal form of it, "severe" the non-verbal form of it. It has nothing to do with functioning! All Autistics/Asperger's have the same (dormant of active) abilities and skills. What makes the difference is the proper or improper environment that will allow these (dormant or active) skills and abilities to develop and grow, or in the worst case kept eternally in dormant state.

The child we've stereotyped as "severe" autistic with no verbal ability, without contact with the surroundings and great difficulty with emotions, is the dormant state. And that of course is what has been widely promoted by Psychiatry as an image of fear to keep parents terrorized. Once the terror is removed and the parents trained to reawaken the dormant skills and talents of these autistic kids, they bloom. I have seen it happen. It is not impossible. Autism is life in stasis! Life in winter hibernation.

  

To ensure the parents will disconnect from the child, they connected "severe" autism with diminished IQ. A mental disability, is the worst barrier between a parent and her/his child. The path of communication, of understanding of learning, is severed. The parent feels that s/he cannot reach the mind of their child.

Yes, "severe" autism was associated with retardation and low IQ! A wrong assumption created and established by non-autistic scientists and specialists who draw assumptions on what they only see. They see but they do not know what it is they see. I can see what they see, but I also know what created each behavior behind the scenes. Believe me, Autism has nothing to do with IQ. It is a Sensory thing. If the mind is fully occupied in an alert state to ensure survival, it has no room to occupy itself with trivial matters. That is what you see. Kids who live in an environment that is not adequate to their needs.
 

Which needs? 

The basic need of food, shelter etc, the sense of security which is constantly damaged by parents who lose patience too easily and often resume to shouting, beating, punishing the kid because they are made to believe the kid is damaged -autistic, diminished IQ as you said, verbally disabled, and more, so they seek no other way to correct them and control them. 

If the kid is thought as stupid, retarded, the parent stops making an effort to reach it, as the parent is made to believe that no effort helps!!! He doesn't know how. He loses hope and often rejects the child. I have seen this damage done to families more often than not! I have heard parents say "What else could I do?" She is mentally retarded they claim, so we result in using the same methods one would use on an animal who is also stupid and non verbal. Brutal force, physical abuse, verbal abuse, emotional abuse, neglect, shouts, over-protection, immobilization, and more.

The murder of autistic teen Alex Spourdalakis by his mother and caregiver: What happened?

Yes, harsh language and harsh actions. But assuming and verbalizing that Autism is associated with retardation and low IQ is just as brutal! And what is IQ anyway, but just another test? Where's the validity? Oh, wait, I found it: 

IQ tests are 'fundamentally flawed' and using them alone to measure intelligence is a 'fallacy', study finds

The IQ tests that exist today were created and formed to measure neurologically typical intelligence. There are no tests that were created and formed or adapted to measure non-neurologically typical intelligence (Autistic intelligence), and also not adapted well enough to cultural differences as well as educational differences. I have lived and worked in 4 different countries in 3 different continents, and I know that not all people around the world know the same, or have access to the same information or experience the same facts while they live.

IQ tests were created for a very specific reason.

To measure the intellectual ability of soldiers. This meant that such a test was a sort of threshold to categorize men who wanted to enlist or were enlisted into general groups to support specific tasks (air force, navy, marines etc).

IQ tests do not even take gender intellectual differences into consideration. They were created by men, for men. Then IQ tests were applied to school kids, then to everyone else. We have learned to apply too much meaning to such useless tests. Why useless? Because just from a IQ score it is impossible to fathom a person's true abilities, skills and talents. In some IQ tests I score around 135 in others 140 and yet in others well above the 145. So what does that mean? My brain gains and loses ability at random? No. It just means that they are not reliable!

For many Aspies, their Αspergers diagnosis was helpful because it meant average or higher IQ for most people deleting it from DSM-5 feels like a loss of identity. 

And that is exactly why they deleted it. 

They want to cut of the top of the Autism "crop" of high IQ and feed it into the corporate mouth waiting ever so hungry to eat up new talent and slaves who keep routine easily over and over and over again. Come on! Who so blind that once the DSM kicked Aspies out more and more companies kept popping up seaking to employ Aspies!!! Dah!!!! They are off the DSM, and off welfare and services, no more free money to pay for therapies and meds. Not being in the DSM, did not take away the hardships Aspies face, Now they just have to earn their way back to health care and services. 

Right for the Job: Placement Service a Boon for People with Asperger's

Tech company looks to hire those with autism, Asperger's

Germany company hires Asperger autists as software testers

Come on people. It's the money-making game. 

In the 1990's they needed the Aspies to have a wide range of lab rats to test the first psycho-drugs for Autistim treatment (Prozac, Paxil, and Zoloft were made available in the late 1980's). Then Psychiatry hand in hand with the pharmaceutical companies had about 20+ years (1990-2013) to get millions and millions of dollars to develop and better these drugs, make more varieties (Risperdal, Zyprexa, etc.) and now they want to sell them. They change the locks on the DSM doors to keep in the more "severe" cases whose parents are easily terrorized and coerced to use more and more often drugs on their kids for diagnoses such as ADHD, autism, bipolar, or what ever else. 

Many Aspies like me, saw the hoax! That is what we are good at. Noticing mistakes. Noticing when something is not quite right. When something does not work. Also many Aspies were convinced by specialists that the "oh! so high functioning form of autism they had, called Asperger's", was in no way the same as the more severe forms that were often also included mental disability diagnoses. 

Divide and rule. They tried that but saw that autism rights advocates, did not fall for that and took all forms of autism under their wings without segregation. Aspies went too far on "taking matters in own hands" and "self-advocacy", so...
The DSM All Mighty expelled them from Psycho-Heaven!
Hell, here we come! From the stairway to heaven on the highway to Corporate-Hell where "social zealots" will swarm around us all day drinking coffee and chatting about their weekends and shopping sprees... 

And since this discussion began with the DSM and the removal of the Asperger's Syndrome from the list of mental disorders, here is something to watch:

http://www.youtube.com/watch?v=PcuhhJ1BaMk&feature=em-subs_digest-vrecs

Personally, I am not bothered that it is removed. DSM is a hoax... The only way that Psychiatry can think itself as a serious "science".

Autism is a difficult thing to understand.

Yes, I assume it is. A  main reason being the idea that has been established for about 30 years now since the 1980's by science and psychiatry in particular that autism is a disability, a developmental disorder, and something that children suffer from (often science says parents suffer just as much from their child's autism).
Probably that is the image of autism that most of you reading this also have. You experience autism as the child that has the problem! The problem you assume is born within the child. And that is how science has been also researching autism, in the hope for a cure!

Somehow, my idea of autism and the way I understand autism and have been helping many parents for the last 5 years to also comprehend, is that autism is not all of the above. And science knows that for a very long time. Science chooses not to disclose what is known. It has to do with profit.  

Autism is not a disability. 

It is a way of being, a different way of thinking, functioning and understanding the world around us. It is not something the child has, but something the child is. And it is autistic because the autistic gene exists in its family. The parents (at least one if not both) are autistic -most probably high functioning as they do use verbal language, have managed to lead independent lives and have married and made children. Also most probably according to research, its siblings have a 50% chance to also be autistic. There are many families with 2 or more autistic children. The genetic base of autism, is a fact.

Most of the parents of these autistic children, grandparents and greatgrandparents do not know they are autistic (autistic meaning they have the gene and the different way of thinking and lifestyle as many already diagnosed adults of same or similar age and gender). Many of these parents might even realize this and seek (and receive)  a diagnosis often of Asperger;'s Syndrome or High Functioning Autism. Some realize they are also autistic, but do not not see as necessary to seek a diagnosis. 

The fact that they have not been diagnosed, does not mean they are not autistic. 
In can also mean that science has focused the idea of autism, so specifically on the child, and childhood diagnosis and early intervention, that is not eager to diagnose adults so high functioning that they (seem) to manage just fine without a diagnosis.
 Science is not interested or eager in diagnosing parents, as science prefers to keep autism as the childhood "illness", disorder, and disability they have established it to be. 

It is greatly profitable!
 
Billions of dollars worldwide end up in the pockets of those who research (70 years now 1943-2013), those who treat (therapists such as psychiatrists especially), and those who sell medications (farmacutical companies) in the name of false hope. Autism is the biggest scam of the 20th-21st centuries!

In the past 4 almost 5 years I have met hundreds even close to a thousand families with autistic children. Their idea of autism was the same as yours is at this moment. They thought that their child was suffering from a disability, while they the parents were the "normal" ones! 

When I explained to them that what they see as autism is not something "born" from within the child, but rather "born" within them and REFLECTED in an enlarged and sometimes distorted way by the child, they realized that they can change the outcome. If the parents decided to accept this fact and subsequently changed their ways of talking, behaving and accepting the different way their child thinks and functions, within months to a maximum of a couple of years, their child changed clinical profile. 

Many of the families that I encountered, had children with a diagnosis ranging from severe non-verbal autism, to Asperger's syndrome or high functioning autism. It did not matter what the child's diagnosis was, once the parents changed how they nurtured and treated the child, the autistic child reflected back to them the behavior that was shown to it.

Badly behaving autistic children, react violently (from around 6-7 years of age) with anger and hostility because they come to realize that their emotional and intellectual needs are not being met. 

Science instead of helping parents synchronize their lives and behaviors with the specific emotional and developmental needs of their child (any child not just one that is labelled autistic), split the parent-child bond by claiming that the child is damaged. Though it is not the child that is damaged or distorted, but the INTERACTION BETWEEN the parent(s) and the child.

Why not all children then in an autistic family are not diagnosed as autistic?
 
Because not all children (their individual personality) is equally sensitive of intro/extroverted. Those children that are diagnosed are mostly the more sensitive ones, the more introvert ones, and the ones that had more traumatic experiences such as a more difficult pregnancy, difficult emotional situations of the mother during her pregnancy with this specific child, more difficult birth, premature birth, physical illnesses after birth and the first 2-3 years of life, children who were not breast fed, children who were breast fed only for a very short period (a few months instead the 2-3 years that is actually normal for a human child), post-partum depression of the mother, other mental of psychological issues of the mother, or even a mother and/or father that are abusive or neglectful towards the child's emotional needs while covering the physical needs (food, schools, clothes, toys, etc).

All of the above causes when combined (for example: a child that has experienced a difficult pregnancy + mother's post-partum + a father that is neglectful) will result eventually in an autism diagnosis by the age of 6-7 years (either sever autism or low functioning). The more the events that a child experienced as traumas, the more the severity of its diagnosis.
What I am saying here is already known by science. They know what and how parental based events that are experienced as traumas by the child affect the outcome of autism.

Here are some links for further reading!
http://www.bordermail.com.au/story/1405190/autism-not-a-mental-illness/?cs=11
http://www.guardian.co.uk/science/2008/may/06/medicalresearch.genetics
http://www.bottomlinepublications.com/content/article/health-a-healing/fathers-age-is-linked-to-autism-and-mental-illness
http://www.sciencedaily.com/releases/2008/05/080505072829.htm
http://www.forbes.com/sites/emilywillingham/2013/03/25/abuse-of-mom-in-childhood-and-autism-risk/
http://en.wikipedia.org/wiki/Refrigerator_mother_theory

Severity versus degree of "warmth"
 
Yes, the good ol' theory of refrigerator mothers was not so far fetched after all! 
Both Leo Kanner who diagnosed (severe) autism and Hans Asperger after whom the Asperger's Syndrome is named, had already since the early 1940's first encounters with autistic children and their families had seen the parental behavioral symptoms that end up reflected by their (autistic) child's behaviour.

Their theory of parental "fault" in autism was never proven wrong with any scientific research! It was rather "silenced" by angry parents that felt attacked and accused when faced by the truth.

Science and in particular psychiatry, endorsed the angry parents, and discarded the cold and distant mother theory as they realized that angry parents cannot become an easy profit!
A fearful parent convinced that their child is disabled, will do everything and anything to have a child that is normal and healthy.

These parents are cows ready to be milked! 

And they have been milked intensively already for the last 30+ years since the 1980's when autism appeared in the DSM as "childhood schizophrenia"!!!!
http://www.psychiatrictimes.com/schizophrenia/content/article/10168/1822823

From that moment on, autism became a money making machine, propelling pharmaceutical companies to produce more and more drugs that psychiatrists then made sure that were sold by the millions and given to unknowing victims by their own parents. A multitude of drugs such as anti psychotics and others that were never tested on children could now be "tested" as parents bought them and gave them to their children thinking they were helping them!
http://voices.yahoo.com/psychiatric-fraud-psychiatrists-making-disorders-8290147.html
http://www.cchr.org/cchr-reports/massive-fraud/introduction.html
http://www.cchr.org/videos/psychiatry-an-industry-of-death/inventing-mental-illness.html
http://www.cchr.org/videos/psychiatry-an-industry-of-death/kids-in-psychiatrys-cross-hairs.html
http://www.cchr.org/videos/psychiatry-an-industry-of-death/drugging-for-profit.html

My grandson was labelled as autistic at three years old.

Many autistic children are diagnosed between the ages two and three years of age. The rise in diagnosing autism in children is almost catastrophic, and I am unsure how truly helpful it is for the child. Diagnosing a child with autism without diagnosing also the surrounding situation and people (parents, siblings, grandparents, etc) that the child acts/reacts to, is not only unhelpful but also utterly stupid. But as I mentioned above, psychiatry/science are not interested in helping the child or the family, their interest is to create a market that needs them and to earn more money and power for themselves. The few that have not yet been corrupt, they speak out but are rarely heard or taken seriously. Parents follow the trends also were autism is concerned and believe the empty promises.

Especially after the fiasco when mothers (mainly middle class) believed the triple MMR vaccines were responsible for autism. Even after the main doctor involved was shown to have produced false results many parents still choose to believe this myth rather than assume responsibility. Unfortunately, most parents do not know that psychiatry manufactured this whole issue about the MMR vaccines to divert the public further and further away from the real cause of autism.

The real cause being the parentl-child interaction that is problematic.

We assume that it is the child causing the problematic interaction while it is the parent causing the problem! The parent is not sufficiently covering the child's mental, emotional and psychological needs while being mostly engaged in covering the child's physical needs (mostly and predominantly material needs and wants).
Science has known that too! Research has shown that children who experience parental (mother mostly) neglect -meaning emotional neglect- had problems with development!
Funny enough, autism is a developmental disability, but in autism parents, parental behavior and parental neglect is a taboo. No one talks about that parameter.

Yet, it is known that the brains of autistic children exhibit the same "shrinkage" as the brains of neglected children. They also show the same developmental delay as neglected children, and also the learning difficulties of a neglected child!
http://www.huffingtonpost.co.uk/2012/10/29/brain-size-loved-neglected-parents-_n_2037610.html
https://www.childwelfare.gov/pubs/issue_briefs/brain_development/effects.cfm
http://www.dailymail.co.uk/health/article-2224393/Why-mothers-love-really-priceless-Shocking-scans-maternal-care-determine-size-childs-brain.html
http://sfari.org/news-and-opinion/blog/2012/shrinking-brains
http://www.nih.gov/news/pr/dec2006/nimh-04b.htm
http://sfari.org/news-and-opinion/news/2011/brain-expands-too-fast-shrinks-too-soon-in-autism (this article is especially interesting as it shows that autistic children actually have a excelled development from birth on, as their brains grow faster than non autistic children, and then the brain starts shrinking!)

A good antidote to this way of thinking is the book "Mistakes Were Made (But not by me)" by Carol Travis and Elliot Aronson. It will help you also understand how autism was created to deceive parents into working more to earn more and spend more on "treating" their autistic child and cure it from its autism. I also disagree with the term autism and autistic. The so called "autistic" children are actually children exhibiting anger and antisocial behavior, language delay and learning difficulties of a child whose urging need for emotional security and a healthy emotional bond with the nurturer/parent was never fulfilled or satisfied!

So now that we know what causes the so called autism, lets see how it can be cured!
 
Restoring the missing link, the missing bond, the missing sense of security! Sensory integration and particularly that part of Sensory integration that deals with the sense of Touch is the ONLY true way to help a child recreate or complete building the emotional bond it needs. 
Activities shared by the parent and child (NOT a therapist!!!) that include all forms of physical contact such as: massage, deep pressure of the skin (back, arms, legs), hugs (as tight as [possible),  tickling, wrestling (parent/child), and many more. For more info check Ayres Sensory Integration, Dunn Sensory Integration, Infant and Toddler massage techniques, etc.
 
Apply these during the day at regular intervals, especially before and after stressful activities or activities that hold potential sensory over loadig for the child. Do not use practices such as ABA (Applied Behavioral Analysis), do not use PECS, or other communication devises or models. Talk to the child, engage it in activities around the house, play with it more, and touch it  hug it kiss it, massage it (before going to sleep at night is one of the best medicines). If the child is sensitive to touch it means that it has developed a sensory defensiveness to help it cope with the sensory (touch) deficiency! 

Never touch the child as a satisfaction to your own need for reassurance. 
The child needs to be touched when it needs it, when it will cover its own need not the parent's. The child will know the difference and if it sees that touch means satisfying another's need than its own, it will become defensive and develop an unwillingness to be touched!!!
http://www.youtube.com/watch?v=LlaFgOGH1y4
http://gentleconnections.com/massaging-your-baby-as-he-grows/
http://www.pediatrictherapy.com/images/content/208.pdf
http://paei.wikidot.com/dunn-winnie-dunn-s-model-of-sensory-processing

Why particularly the sense of touch?
 
Oxytocin is a powerful hormone. When we hug or kiss a loved one, oxytocin levels drive up. It also acts as a neurotransmitter in the brain. In fact, the hormone plays a huge role in pair bonding. Prairie voles, one of nature's most monogamous species, produce oxytocin in spades. This hormone is also greatly stimulated during sex, birth, breast feeding—the list goes on. Obviously, the emotionally starved child (autistic) once it receives the emotional nutrition in needs through Touch of Love (Love in its pure form), will start regaining lost ground and develop!
http://www.sciencedaily.com/releases/2012/05/120519213236.htm
http://www.psychologytoday.com/blog/you-illuminated/201210/oxytocin-improves-emotion-recognition-in-autism
http://www.haaretz.com/news/features/the-love-hormone-autism-connection.premium-1.493759
http://www.science20.com/news_articles /nosetobrain_research_oxytocin_autism_spectrum_disorders-96209
 
As you can see Science and psychiatry knows the cause of autism already! 

But instead of advising (as I do) parents to rebond with their children, they began producing Oxytocin as a drug, a pill to be taken orally! That is how corrupt and unethical they are! While the physical contact is beneficial and helps the bond of love and sense of security/trust in the child, the pill had again adverse effects...
http://clinicaltrials.gov/show/NCT01337687
http://www.slate.com/articles/health_and_science/medical_examiner/2012/07/oxytocin_is_not_a_love_drug_don_t_give_it_to_kids_with_autism_.html
 
Finally, to understand why an emotional bond is so important on a child's sense of security and courage (and act based on secure feelings) read this:
http://www.brainpickings.org/index.php/2012/02/29/visual-cliff-study/
http://scienceblogs.com/cognitivedaily/2006/12/26/what-are-babies-looking-for-wh/

For more reading... 

A General Theory of Love draws on the latest scientific research to demonstrate that our nervous systems are not self-contained: from earliest childhood, our brains actually link with those of the people close to us, in a silent rhythm that alters the very structure of our brains, establishes life-long emotional patterns, and makes us, in large part, who we are. 

Explaining how relationships function, how parents shape their child’s developing self, how psychotherapy really works, and how our society dangerously flouts essential emotional laws, this is a work of rare passion and eloquence that will forever change the way you think about human intimacy.
http://www.amazon.com/dp/0375709223/ref=as_li_ss_til?tag=braipick-20&camp=213381&creative=390973&linkCode=as4&creativeASIN=0375709223&adid=0QCWVVXRD2DC66HKSJ40

Autism in other words, as I explain it to to the hundreds of parents I work with, is the incomplete self. The missing part being the ability or a dysfunction of the ability to bond emotionally with others.
This inability/dysfunction will then surface in the multitude of ways we see in autistic behaviors depending on the child's personality and idiosyncrasy.

Perla

The Brainwashed Parents of Autistic Children

To continue the topic of "The Brainwashed Society", I would like to focus on the nuclear "society" of the family, where I have found that the exact same rules that Milgram exposed in his experiment of Obedience, apply!

Discussion of Autism treatments based on the Milgram "Obedience Experiment"

While Milgram’s research raised serious ethical questions about the use of human subjects in psychology experiments, no such ethical rules apply about the use of children in multiple (experimental) autism treatments and therapies.

Thomas Blass (1999) reviewed further research on obedience and found that Milgram’s findings hold true in other experiments and, from my personal experience and other witnesses, also hold true in how parents experiment with their children in order to cure their child's Autism!

Why do many of the parents expose their children to treatments and supposed therapies that in many ways hurt and abuse their child's self-esteem, psychological health, mental well-being, and physical safety on the instruction of an authority figure, represented by an autism "expert"?

According to Milgram's findings, there are a number of situational factors that can explain such high levels of parental obedience:

- The physical presence of an authority figure, played by a child psychiatrist, child developmental expert, and any other person that assumes the role of an expert, dramatically increases compliance.

- The fact that many of the therapies and treatments are either sponsored or promoted by organizations such as Autism Speaks, or the National Autistic Society, or any other known and trusted and authoritative institution leads many parents to believe that the treatments and therapies they submit their child to, must be safe and will help or cure the child from Autism.

- The selection of experts and therapists status seems random, and gives the feeling that since so many support these treatments and therapies, they must be OK.

- Parents assume that the therapists are competent experts.

- The therapies and treatments to cure Autism are said to be harmless, helpful and necessary for the child and not at all dangerous.

The main problem is that these competent experts, deliberately discard the opinions of adult autistics concerning such treatments and therapies, and disregard the idea that autism is not an illness but a state of being.

They also disregard the possibility that autism is a cultural/social issue shared by all who are labelled autistics, and what seem as difficulties when exposed in the neurotypical society, are actually shared characteristics of all members of a sub-cultural group. Something very similar is seen in the sub-cultural group of the deaf, who have a shared culture, social manners, and language.

Another issue that has been forgotten is, that the subjects had a profit. They were paid a nominal fee. This financial transaction created yet another sense of obligation towards the whole idea of the experiment and its completion.

The same obligation (in a profitable reverse way) we see in the Autism experiment. Once parents pay the experts to fix their children, these parents feel a moral obligation and eliviation of their feelings of guilt, parental responsibility, and anxiety of their child's future. They buy hope!

The only problem is that the "hope" they buy is a fake hope. Autism cannot be cured. The true hope they can get is to accept the truth about their child's autism, to accept that their child was born autistic, and it will be autistic for all its life.

No one has better formulated this truth than Jim Sinclair and many other autistics, including myself, who has tried to expose what autism is. Only autistics know the truth about autism.

So, dear parents, I also hope you will manage to escape this "obedience" experiment Autism has become in the hands of the many so called experts, and embrace the facts about autism.

DON'T MOURN FOR US
by Jim Sinclair

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. It is an outline of the presentation Jim gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity.

Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:
Autism is not an appendage Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence.

It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with. This is important, so take a moment to consider it: Autism is a way of being.

It is not possible to separate the person from the autism. Therefore, when parents say, I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. Read that again. This is what we hear when you mourn over our existence.

This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces. Autism is not an impenetrable wall You try to relate to your autistic child, and the child doesn't respond.

He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language.

Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant. It takes more work to communicate with someone whose native language isn't the same as yours.

And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood.

You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world. And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career--but will never relate to you as other children relate to their parents.

Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision--but is not completely beyond your reach. The ways we relate are different.

Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined. Yes, that takes more work than relating to a non-autistic person.

But it can be done--unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings.

We spend our entire lives doing this. And then you tell us that we can't relate. Autism is not death Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact.

Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to. But not when the child is autistic.

Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives-- but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen.

No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive. This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations.

I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss--not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back.

Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died. You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden.

We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you. This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding.

Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it--and then do something about it.

The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world? Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor.

This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do--away from the autistic child--and start learning to let go. After you've started that letting go, come back and look at your autistic child again, and say to yourself:

"This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

Jim Sinclair
jisincla@mailbox.syr.edu