Anyone who thinks that “redirecting” or “ignoring” the need to stim is a good idea needs to read this, then shut up and think about their choices. 

(via astheshadowslovethecastle)


Since embarking on my intense detailed quest to find out about my own Autism, I have read countless articles, academic studies, books, and personal anecdotes about the one thing that causes the greatest and deepest anguish among Autists – the so-called lack of proper Theory of Mind.

My own mental and emotional state has run the whole range from the eureka moments, to concrete realisations, to self affirmation, to self-loathing and yes, common to many Autists who really care, an overwhelming drive to overcome and overcompensate for what we are incessantly told is our lack, our weakness, our negative handicap. However, from out of this quagmire, one nagging question has slowly arisen. If these wonderful clever reports are accurate, which no doubt they are to a certain extent, then why is it that the folks with so-called expert adeptness at Theory of Mind never seem to be able to figure out what I am thinking, feeling, or needing? Nearly half a century of existence, and I am still trying to expiate for my terrible Autistic “sins” — to no avail — even with a whole lot of explaining and positive overtures to find a common ground. Nope. Very little success.

I have found love and acceptance among a very very few, but these view me with a kind of sweet, patient, doting fondness and, sometimes, an over-protective instinct, rather than as an equal to be discovered, uncovered, savoured, and communed with. These wonderful people who love me so much, to whom I owe much of my survival, they love me to bits. But they do not understand me. And none of them has ever made the effort to even read one single book on Asperger’s Syndrome, even when I pleaded to them to do so. Nope. They are happy with their own perception of me. And should I even dare to be ungrateful? I don’t dare to revolt. So long as they accept that I am weird, I am odd, I am different, and just care for me, what more can I ask for?

I long for real depth of communion. Thus far, I have only found two individuals with whom I can speak freely and honestly, without the danger of shocking them, and with better than 50% understanding. They are far away — one in New Jersey, one in New Mexico.

Where are the people so clever at Theory of Mind? I have not met any, except for those who have been really clever to find my weak spot and use me, abuse me, manipulate me. Is this what neurotypical Theory of Mind is all about then? How to read others’ thoughts and intentions in order to dance around the campfire of a subtle complicated game of power? In that case, I don’t want to know. I don’t want to be a part of this grand “theory,” this epic convoluted drama of cruelty and delight in suffering.

That is what the academic studies never tell you. They just show you what you lack, compared to the others who have it. But is this Theory of Mind really so great to have? For what good purpose, if only to negotiate and manipulate? Frankly, I am tired of always trying to read other people’s minds and always bending over backwards and in every compromising position to try to be sensitive to other people’s feelings.

I am the opposite of not considerate and not empathic. I am self-destructively considerate and empathic — but where has that landed me? I spend 80% of my emotional thought-life trying to figure out other people’s intentions and hidden meanings, and trying to be caring, loving, gentle, considerate. But I do not even command half as much space in their minds or hearts. Not even with their supposed adeptness at Theory of Mind would they bother to try to understand my feelings, my thoughts, and my desires. That is the truth. Painful? Yes, but truth is truth.

How could you say I have no empathy when I am thrown into the depths of hell, crying into the empty suffocating darkness as I resonate with your pain, your terror, and your grief? How could you say I have no compassion when I ache to be of help and comfort to you while you kick at my face? You want me to read between lines that you don’t even bother to write, you want me to see beyond my own world into yours, but you don’t deem me worthy enough to share it with me.

To those who think that having a Theory of Mind is so enviable, think again. Is not literal honesty, straightforward caring, and just being willing to listen when spoken to, is this not enough grace and beauty to offer to a world full of mental and emotional game-playing?

Theory of Mind. Indeed. Whose?


http://www.autismandempathy.com/?p=452 (via lirulin)

(Source: astheshadowslovethecastle)







(via astheshadowslovethecastle)





Kickass Dad of the Day: When Stuart Chaifetz learned that his 10-year-old son, Akian, was being violent and disruptive in class, he was puzzled. He knew Akian, who has autism, to be mild-mannered and sensitive, and had a hunch that something more was going on. But after several meetings with a team of school officials created to help special-needs students, nothing changed. So Chaifetz did what any concerned parent would do.

On the morning of Friday, February 17, 2012, I wired my son and sent him to school. That night, when I listened to the audio my life changed forever. I heard my son being bullied by his teacher and aide. The six and a half hours of audio I had proved that my son wasn’t hitting the teacher because there was something wrong with him — he was lashing out because he was being mocked, mistreated and humiliated. His outbursts were his way of expressing that he was being emotionally hurt at school.

The New Jersey father has since launched a website full of damning evidence and aFacebook page, and he is petitioning the state to change legislation so that teachers who bully children are immediately fired. The aide has been fired, but the rest of the staff have merely been relocated.

“I seek a full and public apology from all those adults who were in my son’s class for what they did to him,” Chaifetz says. “It is also far past time that these issues are allowed to be hidden from public view.”


Seriously, all of my followers watch this. People shouldn’t be allowed to act like this  to anyone. especially to small children with disabilities. Sign the petition, help get rid of these teachers.

I am beyond disgusted. I just. Fuck. I can’t even. How could those heartless people even think about saying those cruel things? Fuck. Everyday I lose more and more faith in humanity.

I am just so fucking angry. How the fuck are those teachers still even teachers?! 

(Source: thedailywhat, via astheshadowslovethecastle)

Why I am against Autism Speaks (made rebloggable by request)


Autism Speaks is probably the most well-known charity out there when it comes to autism.  Just because they have the most media coverage and celebrity support does not mean they are a good organization.  
  • Autism Speaks does not have a single autistic member on their board.
  • Autism Speaks only spends 4% of their budget on “family services”.
  • The majority of Autism Speaks’ money goes toward research, and the majority of that research is to find a way to rid the world of autism, and thus, autistics.
  • Autism Speaks produces advertisments, small films, etc. about what a burden autistic people are to society.
  • Autism Speaks was responsible for “Autism Every Day”, which featured a member of their board talking about contemplating murder-suicide of her daughter in front of her daughter.  This has now be removed from Autism Speaks’ Youtube channel but can still be found elsewhere.
  • Autism Speaks is responsible for the atrocity known as “I am Autism”, a short film comparing autism to cancer, AIDS, and blaming autism as the reason why marriages break up.

In short, Autism Speaks makes it much harder for those of us who have autism to be taken seriously.  Autism is considered to be a child’s disease (not that it’s even actually a disease at all), and you will often hear people say “where are all the adult autistics?”  Well, we’re right here in front of you.  We may have been misdiagnosed with learning disorders, mental retardation and other mental illnesses when the diagnoses of autism, PDD-NOS and Asperger’s weren’t as precise (or even existent) as they are now.  We vary in where we fall on the spectrum.  Don’t make assumptions about us because we can use a computer.  

For further reading, here are a few resources about Autism Speaks:

Why Autism Speaks is No Good for Autistics. 

Autism Speaks Does Not Speak for Me.

I’m Autistic, But Autism Speaks Doesn’t Speak for Me.

An Autistic Speaks about Autism Speaks.

A Chart Regarding Autism Speaks’ Allocation of Funds

Editing the original post so that I can include which Autism related charities to support.  Let me say that besides the first one, all of them are very parent-oriented organizations, meaning that adult autistics may have issues with them.  These are ones that I have either heard recommended highly by autistic parents (meaning autistic people who are parents, not “autism parents”) or that I’ve personally interacted with.  None of them are perfect, but these are far better places to donate your money if you’re looking for a charity to support.

Autistic Self Advocacy Network

The Doug Flutie Jr. Foundation for Autism

The ARC (this is not autism specific, but our local one has a couple of autism-specific events, so was worth including).

I’m glad someone made this.


Girls on the Spectrum: Q&A with the Author of Aspergirls

Is Asperger syndrome really less common in girls and women, or are females just better than males at masking autistic symptoms?

Rudy Simone, a San Francisco singer, writer and stand-up comic, didn’t learn that she was on the autism spectrum until her mid-40s. Simone has Asperger syndrome — a high-functioning form of autism that leads to social problems but no intellectual disabilities — which, like all forms of autism, appear much more commonly in boys than in girls. Ten times more men are believed to reside on the spectrum than women.

But some experts think the real prevalence of Asperger’s in girls may be much higher than believed, because girls tend to be far better than boys at concealing its symptoms, masking social problems and hiding the repetitive behaviors often associated with autism. So, many women go undiagnosed until middle age, along the way given other labels and therapies that do not address their real issues.

To help make up for the lack of resources available to girls with Asperger’s and their families, Simone wrote Aspergirls: Empowering Females with Asperger Syndrome. Healthland spoke with her recently.

Read More

(Source: TIME)


I’m back my lovely followers :) Back, and better still, totally inspired. Having seen Simon Baron Cohen speak at a literary festival on his book (which I loved) ‘Zero Degrees of Empathy’ and the reaction of a friend to one bit of his talk, I follow up his intriguing suggestion. Baron-Cohen is an expert psycho-pathologist in the area of ASD and while the whole area of autism in fascinating, this relatively new research area is just amazing…

It has been previously suggested by Baron-Cohen and others that autism is more prevalent in males (around 5-10 time more) due to an extension of the normal male brain (the extreme male brain). But now, a new idea…could anorexia nervosa be the manifestation of autistic traits in girls?

The more you think about it, the more it seems to make sense; obsessive behaviour: seen with regard to food and weight rather than systems,a want for control, ahatred of change, a withdrawal into oneself, and (importantly for Baron-Cohen’s line of research) anapparent lack ofempathy. In fact, it was reported in TIME magazine that patients with anorexia nervosa were seen to perform poorly on Baron-Cohen’s empathy quotient testing mechanisms.

While major research at the Eating Disorders Unit at the Maudsley Hospital in London (turns out psychologeek is related to the founding Maudsley!!) is delving deeper into these suggestions, including the radical idea that anorexiamay be less to do with social pressure and more to do with genetic or developmental predisposition, the Primal Health Research Centre in London has been looking more at potential causes of such similarities.

It is known that people on the autistic spectrum often have lower oxytocin(known as the ‘love hormone’ due to its part in reproduction, sex and postnatal bonding) levels in the blood. Oxytocin levels in children with ASD are also seen not to develop through life as they do in typical children. Significantly, deficits in the hormone have also been found in people with anorexia. Brain scans are also beginning to unearth similarities in atypical brain structure.

This amazing area of research is part of a movement, with Baron-Cohen very much at the forefront, of re-assessing and re-categorising many neurological disorders in context of what’s being understood about empathy. With these links being researched, could new ways of viewing many disorders and oh-so-importantly new ways of treating them bearound the corner?

Ok, this is something that bugs me.

Anorexia nervosa is literally defined as an eating disorder characterized by excessive weight loss, and irrational fear of gaining weight and distorted body self-perception. The last two points, I believe, are critical in understanding the difference between anorexia (nervosa) and ASD. What this article (and many others like it) is implying is that Anorexia Nervosa and Asperger’s Syndrome are one and the same. I do not think that is the case, at all. I think women with Asperger Syndrome are more likely to be accused of having Anorexia Nervosa due to having the same symptoms present in their male counterparts being grossly stereotyped due to their gender. Aspies of both genders are associated with having a low body mass index and compulsive tendencies, these traits do not equate to a BDD.

Admittedly, anorexia, when used as a term for a symptom means exactly what it says in Greek, “lack of appetite.” Many people with an ASD have this symptom. I have no problem with this usage, but when comparing ASDs to Anorexia Nervosa, that’s a whole different ball game. Anorexia Nervosa is a body dysmorphic disorder. People suffering from it cannot perceive their body as it is. They see themselves as too fat, not muscular enough, disproportional, etc. For that reason, they are extremely afraid of losing what little control of their body they have earned through their compulsive habits. Many even term the dimension of this fear as morbid - as in they would rather die than gain weight. 

People with Asperger Syndrome are strongly compelled to control every aspect of their personal lives as a way with dealing with the chaos they perceive in the world. If they stick to a routine, it minimizes the risk of chaos and quells their anxiety. Unfortunately, this need for routine and sameness manifests in compulsive behavior that may look like an eating disorder (especially if the person exhibiting it is female).

If one of these articles would actually cite interviews with actual women with Asperger Syndrome, Anorexia Nervosa, and some diagnosed with both, I might be able to believe it. As it is, I feel like the “Anorexia Nervosa = Female Aspie” is just a byproduct of Prozac Nation, so focused on a diagnosis and treatment that they ignore the facts right before them.


(via astheshadowslovethecastle)