22 December 2013

Acceptance brings joy

More and more, as I live this life, and share in the joys and tribulations of the lives of others, I believe that at the root of all human misery, is a lack of acceptance. Conversely, behind true joy, if you look for it, you can find acceptance.



  • If you can accept your body, you won't be miserable about how you look.
  • If you can accept your family as they are, you will be happier when you're with them.
  • If you can accept your circumstances, whatever they might be, you can work within them to solve whatever dilemmas you might encounter. You might even find space to laugh.
  • If you can accept that you can't control everything, then the uncontrollable becomes less distressing.
  • If you can accept that not all situations will come out the way you would like, then it becomes much more bearable when they don't.
  • If you can accept autism, you won't need to cure it or fix it. Instead you can move into a place of understanding and awareness, and you can embrace the true joys autism has on offer.
  • If you can accept that people come with their individual foibles, they all become more endearing.
  • If you can accept tragedy, grief has a much diminished impact.
  • If you can accept that some people are going to foist their heartache upon you, then you will be empowered to change your involvement, instead of being stuck in trying to change their "unacceptable" behaviour.
  • If you can accept that there can be different races, religions, sexualities, belief systems all at the same time, in the same world, that world becomes much more beautiful.
On the other hand, if you can't accept, you will always feel pain, hurt, misery as you fight against the current. To me, lack of acceptance is a fast track to misery.

It's your choice. I would like to challenge you to look at the things in your life that are causing you pain - can you find something in there you need to accept?


...

07 December 2013

Empathy: Autism and Neurotypical

Empathy, Autism and Neurotypicals


Empathy, in broad terms, is the capacity to understand and relate to the experience of another person. Compassion, having feelings in response to another person's suffering, flows on from empathy.

There is a point of view well and truly entrenched in the mainstream, that autism and a lack of empathy are synonymous.

I'm here to dispute this - in fact I'm going to completely turn it on its head.

It astounds me how the irony of this appears to have been lost on so many thousands of professional people the world over. How is it nobody seems to have realised that saying "Autistic people lack empathy," is in fact an active demonstration of a complete lack of empathy? Within this statement lies acceptance of assumptions made about what the autistic person is thinking and feeling. There is no challenging of those assumptions either, because the autistic person isn't really respected enough to be brought into the conversation. And the assumptions are so far from the truth, all the statement really displays, is a total lack of empathy skills. It's a combination of hypocrisy, ignorance and incompetence.

To broadly state that an entire percentage of humanity lacks empathy, while not taking the time to genuinely walk a mile in the shoes of those very people, smacks more of paternal condescension than it does of understanding, compassion or empathy. It actually only proves that neurotypicals, who have had the privilege of writing these descriptions, have at the very least totally lacked empathy for those they describe.

To say that autistic people lack empathy, simply put, lacks empathy. It is completely offensive, and undeservedly dehumanising. They become something to fear. It relegates autistic people to the fringes of society and makes them seem of lesser value than the rest of humanity. And if we say that autistic people are somehow less than neurotypical people, surely we are getting something wrong?

Neurotypicals make up the vast majority of the human population, thus giving them the privilege and power to assess and describe all groups, including themselves. But is the neurotypical view of itself a delusion? Neurotypicals consider themselves to have the highest order skills in empathy, but is that even true?



Lack of empathy is described in the Diagnostic & Statistical Manual (DSM-5, 2013) under Antisocial Personality Disorder, as "Lack of concern for feelings, needs, or suffering of others; lack of remorse after hurting or mistreating another."

  • When we don't take responsibility for our actions or apologise for our wrongdoings, are we being empathic?
  • When people judge how another is dressed, their body type or some aspect of their appearance, does that express empathy?
  • When people leave nasty malicious notes on others' pages on the Internet, encouraging them to go away and kill themselves because they have no worth, does that show empathy?
  • When we see starving African children on our TV screens and change the channel instead of facing their harsh reality, does that display empathy? 
  • Does racism express empathy?
  • When we judge someone for having depression or pain for too long, does that show empathy?
  • When we criticise the decisions of our friends and family, does that show empathy? 
  • When we make rape jokes, does that show empathy?
  • When we ask a rape victim what they were wearing, where they were walking, whether they had been drinking, is that an empathic response?
  • When we say "kids will bounce back, they're resilient," does that show empathy?
  • When we judge a woman for staying in an abusive relationship, does that express empathy?
  • When we make judgements of others in general, does that show empathy? 
  • When we say that gay love isn't real love, does that display empathy?
  • When we get angry about someone's religious choices, is that empathic?
  • When we encourage paparazzi to harass celebrities for our next fix of embarrassing photographs, are we being empathic?
  • When parents of non-verbal autistic children talk about curing them in front of them, or thoughts of murder-suicide, and assume that their child doesn't understand what is being said, is there empathy shown here? 
  • When we tell victims of crime or trauma to "get over it, leave it in the past," are we being empathic? 
  • When we bully people and laugh at their tears, are we showing empathy? 
  • When we shun people for being different, is that empathic?
  • When we pathologise different ways of perceiving the world, is that empathy?
That list could go on endlessly, with the terrible things which are witnessed in the day to day lives of the average person. The big question to ask ourselves is this:

When we expect empathy, but aren't taking the time and energy to understand the person in front of us, isn't something wrong with this picture? 

Just because neurotypicals make up the majority of people, doesn't mean the things we say about ourselves or other groups represent the truth. And the truth is, while we are very capable of empathy, humanity as a whole is also full of moments lacking empathy. Neurotypical people make a pretty widespread habit of not displaying empathy towards others, especially minorities. Neurotypical people though, would be offended to be generally described as lacking empathy. Autistic people, as part of the human race, are bound to have moments like anyone else, when they might not show empathy, but this does not mean that they lack empathy altogether, and it's an offensive and an insensitive thing to generalise such a negative descriptor.


Out of all the people I have met in my life, autistic people have repeatedly proven themselves to be the most empathic and compassionate of all. They are the first to help someone in need, the ones who do the sweetest gestures of love and caring. In my experience, autistic people have a great deal more empathy than the average neurotypical.

Sadly though, neurotypical professionals seem to be so generally incompetent at empathising with autistics, that they don't even notice when empathy is occurring right in front of them.



------

ASAN calls for sponsors of Autism Speaks to step away

Autism Self Advocacy Network (ASAN), along with several other organisations, has recently sent out the following letter to sponsors of Autism Speaks.

---------------------------------------------------------

2013 Joint Letter to the Sponsors of Autism Speaks

To the Sponsors, Donors, and Supporters of Autism Speaks:

We, the undersigned organizations representing the disability community, are writing to urge you to end your support for Autism Speaks. We profoundly appreciate your interest in supporting the autism and broader disability communities. Our work is about empowering and supporting people with all disabilities, including adults and children on the autism spectrum, to be recognized as equal citizens in our society and afforded all of the rights and opportunities that implies. Unfortunately, Autism Speaks’ statements and actions do damage to that work and to the lives of autistic people and those with other disabilities. It is our hope that we may work together in a spirit of partnership to find new and less controversial ways for you to show your commitment to our community.

Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.

Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public. The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks has promoted the Judge Rotenberg Center, a Massachusetts facility under Department of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks. We believe this is not the type of action you anticipated when you agreed to provide support to Autism Speaks events.

Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community.  In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.

Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society. In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos,  an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.

Autism Speaks’ only advisory board member on the autism spectrum, John Elder Robison, announced his resignation from the organization this month in protest of the organization comparing autistic people to kidnapping victims and claiming that our families are not living, but merely existing, due to the horror of having autistic people in their lives. In his resignation letter, he discusses his four years spent attempting to reform the organization from the inside without success, stating, “Autism Speaks says it’s the advocacy group for people with autism and their families.  It’s not, despite having had many chances to become that voice.  Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

The disability community recently celebrated the 50th anniversary of the Developmental Disabilities Assistance and Bill of Rights Act, legislation first signed into law by President John F. Kennedy in 1963. The law begins with the statement that, “disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”

We believe that statement to be true. Over the past fifty years, the disability world has focused on making these aspirations into reality, and significant strides have been made. Unfortunately, the actions of Autism Speaks attempt to undo fifty years of hard-won progress and take us further away from a world in which the goals articulated in the DD act are fully realized. We applaud you for your interest in supporting the autism and developmental disability, yet firmly believe that your support would have a more positive impact were it invested elsewhere. As a result, we the undersigned members of the disability community stand together in urging you to end your support of Autism Speaks and re-allocate your donations to a recipient who can better represent the needs and desires of autistic people and our families.

We would be glad to arrange a meeting to discuss these issues in more detail. Please direct your response to Ari Ne’eman of the Autistic Self Advocacy Network at 202.596.1056 or by e-mail at aneeman@autisticadvocacy.org.
Regards,
The Autistic Self Advocacy Network
The Association for Autistic Community
Autism Women’s Network
Association of Programs for Rural Independent Living
National Council on Independent Living
National Coalition on Mental Health Recovery
Little People of America
Not Dead Yet
Ollibean
TASH
The Thinking Person’s Guide to Autism
Queerability
Michigan Disability Rights Coalition
PACLA
Down Syndrome Uprising
ADAPT Montana
YOUTH POWER!
DREAM: Disability Rights, Education, Activism, and Mentoring
Taishoff Center for Inclusive Higher Education




2013 Joint Letter to the Sponsors of Autism Speaks

17 November 2013

Autism is... (flash blog)

Autism is giggles and tickles.

Autism is pulling all the pillows off the couch, laying them on top of your child, and then squishing him because he loves it so much!

Autism is courage and honesty.

Autism is being hyper aware of all your child's achievements, and never missing even the smallest thing.

Autism is laughter and love, and quirky humour.

This is autism.

Autism is a whole other world unavailable to those not touched by autism.

Autism is creativity.

Autism is problem-solving.

Autism is innovation.

This is autism.

Autism is intelligent, even when non-verbal.

Autism is seeing, hearing, aware.

Autism is deep, pervasive empathy.

Autism is a conduit to discovering deep internal reserves of resilience and positivity.

This is autism.

Autism is a means to connect with people whom we might otherwise have never met.

Autism is colour, and music and sensory beauty.

Autism is looking optimistically towards a future of our own design.

Autism is thinking outside the box.

This is autism.

Autism is being willing to step away from conformity and living a unique experience.

Autism is millions of different experiences, in millions of different lives.

Autism is seeing the world through a different lens.

Autism is food which doesn't touch.

This is autism.

Autism is depth of knowledge on a wide range of wildly weird and wonderful topics.

Autism is passionate.

Autism is patterns, lights, shapes, sparkles.

Autism is noticing tiny elements of beauty that others overlook.

Autism is stuff that spins. 

This is autism.


Autism is at least 1% of all human life.
It has value.
It has beauty.
It has warmth.
It has love.
It has joy.
It adds to our world.

This is autism.

---------------------------------------------------------------------
For other flash blogs, check out this page: http://thisisautismflashblog.blogspot.com.au/

24 July 2013

Research says Autism is NOT an epidemic

Myth: "Autism is an epidemic and the prevalence of autism is rising rapidly. We should all panic and quickly look for a cure before..."

...well who knows what people think is likely to happen if we don't eradicate autism. Maybe they're leaning towards a zombie apocalypse? It could explain the level of fear-mongering associated with discussions of autism prevalence rates.

Here's a previous article I wrote on the subject: > Click <

And here's an interesting research paper (actual scientific evidence) on the prevalence of autism spectrum disorder amongst adults: > Click <

The gist of it? Prevalence is not related to age and adult rates are similar to that found in children.

08 July 2013

A Note to Grandparents



Dear Grandparent,

How you involve yourself in the life of your autistic grandchildren can make or break your entire family. Parents of autistic children often have to distance themselves from negative family members, because of the harm it causes for their children to be around such influences.

Do you want to find yourself on the outer fringes of your children's and grand children's lives?

If you can admit to having said things like, "But there's nothing wrong with him," or, "A bit of discipline will fix that," or, "It's all in the parenting style," then sadly, you have to also admit that these are judgmental statements and you have been a negative influence in your family.

So you need to make a decision - do I want to have positive involvement or not? If your answer is yes, then I highly recommend the following page:

Especially for Grandparents... <--click!

An excerpt:

What if I don’t believe the diagnosis?
That’s your privilege. But keep in mind that the child’s parents believe it. They live and work with the child daily and are in a unique position to notice the deficits. Because they care deeply about that child’s future, they aren’t concerned about the stigma of a label, as long as it means the child is eligible for the specialized programming she needs. They have put their pride aside for the sake of the child and expect the same from the rest of the family.
Consider carefully what could possibly be gained by refusing to believe the diagnosis. Then consider what could be lost. The parents are already living with a great deal more stress than other parents, and they don’t need the added strain of skeptical or judgmental grandparents. Otherwise you may suddenly be faced with the pain of being unwelcome in your grandchild’s home.

The article is focussed on Asperger's Syndrome, but all of the content also applies to autism spectrum disorders in general. If you want to have positive relationships in your family, then I hope you will follow the instructions in that article.

20 June 2013

Caffeine, ADHD and Stimming Behaviours


Today I was prompted to recall how about ten years ago, I attended a very interesting seminar presented by a visiting psychologist from Sydney. Sadly, I can't remember his name anymore. The presenter described himself as having undiagnosed ADHD, paced back and forth rapidly and constantly as he spoke, and presented a lot of information in a very condensed, speedy fashion. A great deal of concentration was required to take it all in.

But boy was there a wealth of good stuff in there. I think that seminar helped me to see my son more clearly and with a deeper compassion. And in many respects, I think this has coloured most of my interactions with my son and my decisions since then. Below are a couple of key things I got out of the seminar.




Caffeine & ADHD

The presenter told us about the medications used for ADHD, and how their stimulant effect would allow neural connections to happen between the frontal lobe and the base of the brain, creating calm and more organised thought, and hence allowing clear and better decision making to occur. Impulse control is made possible by these medications, and he explained how terrifying it must be for kids who were unable to control themselves. He described how without these connections, spontaneous and risky decisions could be made because once an idea was present, the neural connections were not there to prevent the action from taking place. By way of explanation he mentioned that scars on the fingers of young children had at one time been used as a diagnostic observation for autism, because if the child had been told "Don't touch the stove, it's hot," they would automatically reach out and touch the stove. The idea had been presented, but there was no connection to the part of the brain that would prevent the action from occurring. (I guess this is also an early indication of the many overlaps between autism and ADHD).

He then went on to say that caffeine, also being a stimulant, could have a similar effect. He said that giving caffeine to a child with genuine ADHD would calm them, and could even help with sleep problems. He also touched on the frequent misdiagnosis of energetic young boys with ADHD and described how caffeine could be used as a rudimentary diagnostic test. "Give your child a glass of coke," he said, "And if they calm down or even get sleepy, they more than likely have ADHD. You should then get them properly assessed."


It's interesting to see the studies play out this caffeine theory. Here's an interesting research-based article on the subject - Caffeine's Effect on ADHD Symptoms. 

There are many other articles out there on the internet on this topic. Plenty of stuff to read. There's heaps of info out there about the benefits and side-effects, be sure to do your research before you start pumping your children full of caffeine! And make sure to look at the scientific/medical studies as well as anecdotal evidence. The long term effects of excessive caffeine use can be quite harmful if you're not careful. A quick Google search will be worth the effort.





Stimming behaviours

Another thing I found extremely useful that day was a lengthy discussion about what we call "stimming" behaviours. Stimming is a term used to encompass a number of different physical behaviours which provide much needed and specific stimulation for the nervous system of the individual concerned. Some of the more common of these seen in autism are hand-flapping, spinning, jumping/bouncing, rocking, swinging and licking/mouthing. In someone with ADHD, it might look like something simple like a jiggly foot while seated, or a wriggly bottom in a seat.

The key message from the psychologist was never to simply suppress the behaviour. He made it abundantly clear that if we try to suppress the unusual behaviour, a more bizarre (and/or more annoying) behaviour will usually move in to replace it. If we try to stop someone jiggling their foot, they still need an action, so they might start tapping their pencil on the table, or repeatedly clicking the button on the end of their pen. If we try to physically hold down flappy hands (yes, I was once advised to do this by a supposed autism "expert" - but I was horrified and never did it), the nervous system still needs whatever it is seeking through flapping, so another behaviour will pop up in its place. And what that might be is unpredictable. It might be something much more awkward or embarrassing, like hands down pants in public places.

So his advice was, if you want to get rid of a certain behaviour, first of all decide whether your need to do so is really that important. What is motivating your desire to remove that behaviour? Who really benefits from getting rid of it? Does it really matter? Are you just allowing yourself to be embarrassed by something which isn't a big deal in the bigger picture? Are you being too controlling or worrying too much what other people think? Will it be more distressing for your child to get rid of it than to just allow it to continue?

Is it really causing any harm?

Then, if you have a socially unacceptable behaviour to deal with - such as hands down pants in public places, always be sure to negotiate something more socially appropriate to replace it, or you could find yourself with a much bigger problem. Maybe offer a fidget toy. Try many options until something works.

For example, the psychologist, throughout the presentation, was fiddling with his wedding ring and twirling it around his finger. Until he pointed this out though, I was completely oblivious. He explained that this was a behaviour he had given himself which was virtually invisible and completely acceptable, but helped him to organise his thoughts and served the physical need he had to fidget.

Always remember the behaviour has appeared for a physical reason, and never punish for doing it. This behaviour isn't intentionally there to annoy you, so don't take it personally and don't get angry about it. It is very difficult for people to drop compulsive habits, so a more supportive attitude is needed if you want to make positive headway.  Certainly offer regular rewards for any show of self control. How you do this is up to you, but it's vital to any chance of success.

Take what you want from these ideas - but for what it's worth, everything he presented that day has turned out to be excellent advice as far as I'm concerned.

18 June 2013

Businesses hiring autistic people

There is a trend among businesses requiring a specific kind of attention to detail and focus, to hire autistic people to fill the need. This is because of special traits which tend to be present in autistic people. Below is a fantastic, exciting and inspiring example of this, in SAP Germany. Be sure to check out the thinking behind all of this in the video from the SAP web site.

Diversity and Inclusion Video from SAP web site:
http://www.sap.com/asset/index.epx?id=c95ce76c-fd87-4664-a8ad-420cf927d8b4



SAP is embarking on a global program to hire people with autism as software testers, programmers and data quality assurance specialists, the company announced Tuesday. Autistic employees can offer competitive advantages, according to SAP, while helping the individuals secure meaningful employment.
http://scn.sap.com/community/business-trends/blog/2013/05/24/video-sap-is-hiring-hundreds-of-autistic-workers
May 24, 2013


MSN News: German company seeks to hire 650 autistic people
http://news.msn.com/world/german-company-seeks-to-hire-650-autistic-people
May 22, 2013


--------

16 June 2013

On why murdering special needs children is always bad

I was replying to a post elsewhere, where the author showed deep compassion and sympathy for Dorothy Spourdalakis. She didn't have any special needs children herself, and took the position of thinking it wasn't fair to judge because she could never know what Dorothy's experience had been. She was deeply affected by Alex's story and I can understand how she felt she was walking a kind and non-judgmental road, but she had really missed the point - which is that murdering our children is never okay.

As I replied and tried to inform her of a different world view, it came to me like a revelation, the simple explanation for others of why it is not okay to do this.


FACT: Special needs parents are not somehow especially able to kill our children, and we shouldn't be afforded extra privileges to do so either.

FACT: Parents who do kill their children have their own special thing going on in their heads, and it's not because of the child. It was there already, their capacity to kill. Autism has nothing to do with it.

I can't currently think of a way to make it any simpler.


We value our children as much as you value yours. We would put our lives on the line for our children just like you. Killing our children is not on our agenda any more than it is on yours. If people from within our ranks kill their children, they absolutely deserve judgement, just like you do if you kill yours.




 ---

15 June 2013

RIP Alex Spourdalakis - yet another autism murder

Alex Spourdalakis, autistic 14-year-old, was murdered last week by the very people entrusted with his care. 

RIP Alex Spourdalakis

Alex is one of such a long list. And his story has really gotten under my skin, for a number of reasons, as outlined below.


What happened?
 
His own mother, Dorothy Spourdalakis, with the support of his godmother Jolanta Agata (Agatha) Skrodska, stabbed him four times in the chest. This happened several hours after they had attempted to give him a drug overdose of sleeping pills and decided they couldn't wait any more to see if the medication would kill him. So his own mother went to the kitchen, chose a knife, went back to the bedroom, and plunged it into her own child's chest, over and over again, while he lay sleeping in his bed. She also nearly severed his hand while slitting his wrist.

She then handed the knife to her co-conspirator, his godmother and co-carer, who proceeded to use it to kill the family cat because they didn't want it to go to a shelter. Then the two women cleaned the knife, returned it to the kitchen knife block, and attempted to overdose themselves on sleeping pills. After locking the bedroom door, they laid down beside poor dead Alex and went to sleep.

The only small mercy I can see in this is that Alex was fast asleep when his mother stabbed him.


The Media Message

The media is failing Alex. As a whole, the message is currently focused on the idea that Alex was a difficult autistic teen who weighed 200 pounds and was prone to violent outbursts. His mother and godmother were "overwhelmed" and "beyond exhaustion". The media are saying that the system, by leaving them unsupported, drove these two women to commit premeditated violent murder of a helpless autistic teen.

What the media seems to not realise is this: the message they are spreading is that the lack of supports and services probably justified murder, even premeditated murder. It's apparently not their fault. It's everyone else's. Also, an autistic person's life has no real value, and it's okay to commit murder in order to step back from personally difficult circumstances.

I would appeal to the media to spend more time looking into Alex's story, finding out who he really was and how he touched lives, sharing those details with us. If this were not a disabled child, the media would automatically do so. They would raise him up, spend time talking about how wonderful he had been in life, how he had touched so many lives, how loved he was by his community, and would share little personal stories offered by people who had known him.  They would do this while concurrently pushing home the point that murdering one's children is not okay, and publicly vilifying the parent.

But because Alex is autistic, and despite the crime being so violent and awful - and premeditated - once again the message is one of sympathy for the murdering parent. Why is it justifiable to violently kill an autistic teen, but not okay to kill a neurotypical one? Why is that the default position of the media?

The media needs to turn this lens on the choice of focus they use, because they are propagating the tragic and horrific idea that disabled children's lives don't hold the same worth as other children's lives. They need to pick up their game and get the message right.




Let's look at the situation more bluntly and honestly.

Earlier in 2013, Alex's mother had publicly appealed for help and she claims that help had not been forthcoming. She purportedly received $15,000 in cash raised from concerned citizens who sent money. Nobody seems to know how that money was dispersed. And later there was an additional appeal for more money. She did receive an offer of DCFS services via the hospital two weeks before she killed Alex, but she apparently rejected those services.

Instead, she took Alex out of hospital. She took him home, and after just a week, started to conspire with his godmother to kill him. 

She gave up on her own son.
She chose to kill him.
She spent a week talking about it and planning it with another person.
She premeditated it.
There was no sudden mental snap.
It wasn't a crime of passion.
She didn't suddenly fly into a rage and do something terrible in the heat of the moment.
She planned it.
FOR A WEEK.
And then carried it out, three times.
She gave him an overdose of sleeping pills.
She waited for hours, checking his pulse and breathing to see if he was dead yet.
That was murder attempt number one. 
Eventually she decided more drastic action was needed.
So, after attempting to murder him once and failing, she decided to do it again.
She went and got that knife from the kitchen.
She probably spent time deciding which knife would be best for the job.
Then she went back to the bedroom, stood over her sleeping son.
She probably took a moment to think about which way would be best to stab him. 
Then she plunged the knife into her son's chest.
And she did it again.
And she did it again.
And she did it one final time.
That was murder number two. 
Then she sliced open his wrist for good measure - this would be the third attempt to kill him.
She nearly took off his hand, she cut his wrist so deep.


She murdered her own son in three different ways, to make sure it was really done. She was methodical, systematic and patient. She made sure the job was done and there was no chance of his survival.

There is nothing here to be sympathetic about.


I am also suspicious of the supposed suicide attempt by these two women. Given they already had seen the sleeping pills not work in their attempt to kill Alex, I question the veracity of their claims that they were attempting suicide. I am of the view that they more likely wanted to make themselves look like victims and garner sympathy after they were found.


So, what's to be done?
 
It's really very simple.

Next time you hear of an autistic or disabled child killed by his/her parents, instead of thinking,
"Oh those poor parents, they must've been desperate."
Remind yourself to think this:
"Oh that poor child, how awful."

It comes down to people seeing it differently, and reminding others to do so as well. Murder of a child is simply not the behaviour of a normal caring person.  It is a crime, regardless of the circumstances. It's that easy to understand.


Also, there is a Community Vigil for Alex scheduled for 7am 16 June.  Click for details.


-------------- 
Other articles about Alex: 

29 May 2013

Barb Rentenbach- An Inspiration and an Important Lesson for all of us

This article, written by Ariane Zurcher, describing Barb Rentenbach's book I Might Be You: An Exploration of Autism and Connection, proves you simply can not know what your child - yes, even an autistic mute - might later achieve in life.

To me this is a powerful lesson in not placing limitations on autistic people.

http://www.huffingtonpost.com/ariane-zurcher/living-with-autism_b_3299197.html


http://emmashopebook.files.wordpress.com/2013/05/barb-lois.jpg
Barb Rentenbach (left)

24 May 2013

Wandering

With three tragic drowning deaths of autistic children who wandered in the past week, wandering has become a big issue. This article is by far the best thing I've read on the topic so far:

http://www.babble.com/mom/autism-community-reels-three-drowning-deaths-in-one-week/


Landon Bryce also reposted a previous article and video clip. This is essential viewing and will shake up your way of looking at wandering:

http://thautcast.com/drupal5/content/wandering-and-gulf-between-parenthood-and-me

http://farm6.staticflickr.com/5008/5353693397_66981662db_z.jpg

22 May 2013

Understanding Autism - Video Guide for Secondary School Teachers

I just came across this wonderful resource set of videos for teachers. Remember, every autistic student you meet is unique, and it is inappropriate to generalise what you think their needs are. Always remember to respectfully ask your student and gauge their responses to your interventions, adapting as needed.

Part 1 of 4


Click for  Part 2 - Part 3 - Part 4

19 May 2013

Diagnosis by Committee

Temple Grandin talks about label-locked thinking and how it limits the way we approach ourselves and our loved ones.

http://www.salon.com/2013/05/18/temple_grandin_on_dsm_5_sounds_like_diagnosis_by_committee/


Temple Grandin on DSM-5:

Excerpt:

"Label-locked thinkers want answers.

This kind of thinking can do a lot of damage. For some people, a label can become the thing that defines them. It can easily lead to what I call a handicapped mentality. When a person gets a diagnosis of Asperger’s, for instance, he might start to think, What’s the point? or I’ll never hold down a job. His whole life starts to revolve around what he can’t do instead of what he can do, or at least what he can try to improve.

Label-locked thinking goes the other way, too. You might be comfortable with your diagnosis but worry that it will define you in the eyes of others. What will your boss think? Your coworkers? Your loved ones? Half the employees at Silicon Valley tech companies would be diagnosed with Asperger’s if they allowed themselves to be diagnosed, which they avoid like the proverbial plague. I’ve been to their offices; I’ve seen the work force up close. Many of the hits on my home page come from Silicon Valley and other areas with a high concentration of tech industries. A generation ago, a lot of these people would have been seen simply as gifted. Now that there’s a diagnosis, however, they’ll do anything to avoid being ghettoized.

Label-locked thinking can affect treatment. For instance, I heard a doctor say about a kid with gastrointestinal issues, “Oh, he has autism. That’s the problem” — and then he didn’t treat the GI problem. That’s absurd. Just because gastrointestinal problems are common in people with autism doesn’t mean that the GI problems are untreatable on their own. If you want to help the kid with GI issues, talk about his diet, not his autism."

07 April 2013

"Are you at peace with your decision?" Amanda Baggs' story of survival in hospital

Amanda Baggs is an autistic woman, and an autistic rights activist. Recently she has been very ill, and has been hospitalised. The seriousness of her illness has meant that she has needed a feeding tube to ensure her survival, but instead of automatically going to all lengths to keep her alive, doctors have tried to talk her out of her feeding tube -- out of living -- because of her perceived quality of life issues due to her autism.

Amanda has had to fight tooth and nail to get that feeding tube into her stomach. And then, just before she had it inserted, she was repeatedly asked if she was at peace with her decision. The fury that question brings up in me is difficult to express. Imagine being the person who is being asked. At peace with her decision to live??! Of course she was!

Her plight highlights a hidden prejudice, a devaluing of the lives of people with disabilities in the medical system. Amanda expresses her situation much better than me, so go ahead and read her material to find out more.

"Are you at peace with your decision?" <-- Click

I have triumphed over the damn nasogastric tube. It will never scare me anymore. The last one scared the shit out of me because it was done barely with my consent and it was huge and my nose and throat are both tiny so it was like a giant rod keeping me from swallowing and making me gag all the time. I am so happy though because I will never be scared of this again. It&#8217;s not even all that bad. I&#8217;ll have it until partway through the procedure to place the gastrojejunostomy tube and then they will remove it while I&#8217;m asleep,sparing me the gagging and retching. I&#8217;m absurdly happy how easy this was.

30 March 2013

Autism Acceptance Month

April is known as "Autism Awareness Month", but historically the messages spread during April have been damaging to autistic people, so something different has popped up. Created by autistic people in response to the problems seen in the former, "Autism Acceptance Month" is a more positive way to celebrate those autistic people you know.

Will you take the pledge? (click to do it)
"I pledge to only attend, speak at or otherwise participate in autism panels, conferences and events that meaningfully involve Autistic people. I choose not to give my business or my time to settings that fail to include Autistic voices in conversations about autism."

Here are some of the reasons why awareness doesn't quite cut it:

Autism awareness - teaches people autism exists. I think we all know this.
Autism acceptance - teaches people autism is something worthwhile.

Autism awareness - seeks interventions to eradicate autism.
Autism acceptance- looks for ways to work with strengths. 

Autism awareness - wages war on autism. 
Autism acceptance - calls for a peace treaty and asks to work together.

Autism awareness - focuses on spreading messages of fear.
Autism acceptance - focuses on spreading messages of love. 

Autism awareness - falsely tells people that autism is an epidemic.
Autism acceptance - points out that autism is not new or out of control.

Autism awareness - says that families living with autism are miserable.
Autism acceptance - focuses on the joy of living with an autistic person.

Autism awareness - describes autism as a disease.
Autism acceptance - describes autism as a diversity issue.

Autism awareness - searches for a cure.
Autism acceptance - says autism is a good thing with no need for a cure.

Autism awareness - looks for a way to prevent autism before birth.
Autism acceptance - sees this as a hateful eugenics movement. 

Autism awareness - seeks donations/funding.
Autism acceptance - asks only for a welcoming smile and a supportive hand.

Autism awareness - aims to find ways to make the individual more "normal".
Autism acceptance - first embraces the strengths of the individual.

Autism awareness - shares hard parenting experiences to get its message across.
Autism acceptance - listens to autistic people.

This list could go on forever- feel free to leave more of these in the comments.

I have spent the last 15 years talking the talk, and walking the walk of autism acceptance, as a parent of an autistic boy who has raised him to be proud of his autism. Sadly, in all of those years, I don't think I have met any other parents who truly accept that autism is a positive part of their child. I would like to see that change. Sometimes I think parents see acceptance as being equivalent to giving up. But if acceptance is giving up, then it begs the question, what are they giving up on? It's an important point to consider.

I am thrilled that my son is proud of who he is, loves his autism and knows his strengths. I would like other parents to know that feeling too. I would like to see more parents embrace their child as a whole person and start working with autism instead of waging war on it. Because when you wage war on autism, no matter which way you look at it, you are waging war on your child.

So this April, when you think of autism awareness, try switching out the words and thinking about acceptance as a primary motivator instead.

29 March 2013

Autism Speaks video "I Want to Say..."

The video is called "I want to say...". The organisation is called "Autism Speaks". I've said it before and I'll say it again, autism isn't doing the talking here.

I had thought this video might share more of what the autistics included in it wanted to say. Instead, parents are lovingly describing their kids. The doctor is intensely talking and telling us what to think. The teacher is sharing his heartfelt experiences and observations. The technology used by the kids is paraded before us occasionally, while adults describe their observations of how it appears to work well, almost miraculously. These voices are fine, in general. But really, where are the voices of these children we are watching? What is their message? What do they want to say? What was it like for these young people to finally be able to communicate? How did they feel?

This was a wonderful opportunity to allow them to share, to educate us on their experience. An opportunity sadly set aside.

Autism Speaks' latest promotional video is a vast improvement on the blatant scaremongering of the past, where they would show frightening scenes of screaming children, desperate crying parents and families in disarray. Before, they slapped us in the face with terrifying trauma and told us that was autism. Disappointingly though, I find this new one more cunningly manipulative.

There is still some clear intent to frighten viewers, with alarmist statements from the doctor, such as "more children will be diagnosed with autism than AIDS, diabetes and cancer combined". These things don't belong in the same sentence with autism, and this statement is offensive and irresponsible. It's an unreasonable comparison - all three of those others are potentially deadly and devastating diseases. Putting these together is Autism Speaks' cunning way of continuing to perpetuate their ongoing message that autism is a disease. They have declared war on autism, so I guess we shouldn't be surprised if they hold onto their original message in different forms.

Let's be clear - autism is not a disease.

Also, the intensely dramatic statements by the doctor make it seem like more and more children will get autism over the coming years, and we should all be very afraid. He is making it everyone's potential problem. It appears his role is to intensify the urgency of the "problem" and make people want to send money before their child gets autism. Without actually using the word, he is cleverly reminding us of the long time message of "epidemic". At least previously, they came right out and said it. It feels much more manipulative now, and honestly I find it disingenuous, condescending and offensive.

I loved seeing all the beautiful children and their experiences. I loved seeing the passionate parents who obviously love their children completely as they are, and only want what they think is best for their kids. (Sure, they made some mistakes, but it was a nice change to see adoring parents instead of overwhelmed parents on one of these videos). I loved the teacher, and his obvious humility in the face of the courage of his students. I appreciated his honesty when he described how he realised now, that he had previously pushed them so hard, without knowing what he had been putting them through. There was generally a lot more empathy expressed for the experience of the kids as well. I wish though, that the kids got to communicate more. Nobody was asking them questions for the video. I wanted to know what they were thinking, instead of having that guessed by and those guesses imposed on me by neurotypical adults. It seemed like it was more important to show a blend of minorities across genders (which I will say, is still an improvement on the previous videos), than to take a moment to hear what these young people had to share.

I always love seeing Temple Grandin on anything, she is so awesome. But where were the other autistic adults? And anyway, she was talking about her experiences as a child. Do Autism Speaks really still not realise that these same challenges/needs exist for adults? Or is this a  purposeful exclusion of autistic adults because they have clearer messages about what they want/need?

Other phrases/statements which bothered me:

"Swallowed by his autism" - in that particular case, he is swallowed by his pain, not autism. Autism does not equal pain and the two concepts should always be separated. And besides, the autism was already there, it is who he is. To act like it is a separate entity, some sort of invisible enemy swallowing him up, is not okay.

[Autism] "is a nightmare imposed"- the doctor should know better than to use alarmist words/phrases like this.

"He's really sweet, for being an autistic child" - this suggests that autistic children are generally something other than sweet. Apparently this boy must be very unusual, to be considered sweet. I know this is his mother (a layperson) who says it, not Autism Speaks. But Autism Speaks chose to include it in the video. Shame on you, Autism Speaks. How irresponsible can you be?

-----------------

Click here for other flash blog posts on this topic

-----------------

Click below to watch the video on Youtube:







----

27 March 2013

What about the murdered autistic children?

All of the people in the list below were murdered as a result of their autism or disability. 

Credit for this list goes to Autism Wars - Until The Murders End. 
(NB: I think she, in turn, got the list from the Autistic Self Advocacy Network (ASAN).)

TIFFANY PINCKNEY 23, starved by her sister, 2005. | ZAIN AKHTER 12, Strangled by her mother, July 2010 . | AJIT SINGH 12, forced to drink bleach by his mother. February 2010 | BENJAMIN BARNHARD 13, shot by his mother, August 2011 | BETTY ANNE GAGNON 48. tortured to death by her sister and brother-in-law. November 2009 | CALISTA SPRINGER 16, smoke inhalation-chained to her bed by her father and stepmother, February 2008. | CHASE OGDEN 13, shot by his mother along with his sister Olivia, October 2010 | CHRISTOPHER DEGROOT 19, locked in apartment set on fire by his parents, May 2006 | CHRISTOPHER MELTON 18, gassed by his mother. June 2010 | DANIEL CORBY 4, drowned by his mother. March 2012 | FARYAAL AKHTER 2, strangled by their mother, July 2010 | FRANCECCA HARDWICK 18, locked in a burning car with her mother, October 2007 | GEORGE HODGINS 22. shot by his mother, March 2012. | GERREN ISGRIG 6 years old, died of exposure after his grandmother abandoned him in a remote area, April 2010. | GLEN FREANEY 11, strangled by his mother. May 2010 | JEREMY BOSTICK 11, gassed by his father. September 2009 | JEREMY FRASER 9 years old, died of recurrent leukemia alter his mother withheld the medication that would have saved his life. March 2009 | JORI LIRETTE 7, decapitated by his father, August 2011. | JULIE CIRELLA 8, poisoned by her mother. July 2011 | KARANDEEP ARORA 18, suffocated by his parents, October 2010. | KATIE MCCARRON 3 years old, suffocated by her mother. May 2006 | KENNETH HOLMES 12, shot by his mother. July 2010. | KYLE SNYDER 9, shot by grandmother, October 2010. | LAURA CUMMINGS 23, tortured to death by her mother and brother. January 2010 | LEOSHA BARNETT 17, starved to death by her mother and sister. May 2011 | NAOMI HILL 4, drowned by her mother, November 2007 | NOE MEDINA JR. 7 months, thrown 4 stories by his mother, August 2011 | PAYTON ETTINGER 4, starved by his mother, May 2010 | PETER EITZEN 16. Stabbed by his mother. July 2009 | ROHIT SINGH 7, beaten to death by his father, September 2010. | ROBERT ETHAN SAYLOR 26, asphyxiation during catastrophic police encounter, January 2013 | RYLAN ROCHESTER 6 months old, suffocated by his mother because she believed him to be autistic, June 2010 | SCARLETT CHEN 4 years old, drowned by her mother, July 2004 | STEVEN SIMPSON 18, doused with tanning oil and set on fire during his birthday party by party guests, June 2012 | TONY KHOR 15, strangled by his mother, October 2009 | TRACY LATIMER 12 years old. gassed by her father, 1995. | WALTER KNOX HILDEBRAND JR 20 years old, died of a seizure induced by his brother's physical abuse. November 2009 | ZAHRA BAKER 10, murdered and dismembered by her stepmother and perhaps her father. October 2010.

I have one simple message to follow this list - it is never okay to murder someone, even if they have a disability. We often hear people say, "Well, these parents must have been under enormous pressure. It's understandable really." But, quite frankly, that's an insane statement, which is only ever applied to murders of disabled people - and it is simply not true.

It's not understandable, okay or reasonable that someone can kill a baby, child, young person or vulnerable person in their care. I can understand that parents might be completely stressed out of their minds. I can understand that they might be pushed beyond breaking point. But this never justifies killing another person, disabled or otherwise. And certainly not a member of their own family.

I think that's the proverbial litmus test in this case. Perhaps you can for a moment try to imagine yourself, the parent, in an unbelievably stressful situation where your child has pushed all of your buttons and you're feeling utter rage, total helplessness, absolute exhaustion and complete overwhelm. Can you ever see in that circumstance that killing your child might be an okay or reasonable response to the situation? Is it the only course of action left to you? Is it the best thing you can do? Would it be merciful to your child to snuff out their light?

I can categorically state as a long-time parent of an autistic child, that it has not once, does not now, and never will feel okay or reasonable for me to kill, or consider killing, my own child, no matter what the circumstances. In fact it has never occurred to me. I'm pretty sure I'm not alone there! Furthermore, I cannot think of a single rational reason anyone could ever give me that would ever convince me that killing my child would be a worthwhile course of action.

These are not mercy killings and the murders are not reasonable, because the killers always had a choice, and the victims did not. They could choose to kill, or they could choose not to kill, and to find a different solution. If they were so desperately overwhelmed, they could have sought help. All it takes is a phone call. And if that one doesn't work, another phone call. And another. And another. As many as it takes until you get the help you need. I know this is true, because I've made those phone calls myself. Because I valued my child's well-being enough to never give up on finding a positive solution. Hmmm, a toss up between asking for help and killing my child. Tough decision, NOT.

Murder is not okay, regardless of the victim's disability status.

NB: This may seem a very dark topic to post on here, but it's imperative that the conversation not be snuffed out. These deaths cannot go unnoticed and without comment. Because the more we stay quiet, the more people will think it's okay. It logically follows that therefore it will happen more, and then more excuses will be made for killers, who will continue to get away with murder.

http://4.bp.blogspot.com/-124ZfT6pyP8/UU-a-mOwRfI/AAAAAAAAATU/Bn-ZMmqSMR4/s1600/vigilpic.jpg

Autism Wars - Why are autistic people protesting Autism Speaks?

They call themselves 'Autism Speaks', but it's certainly not autism doing the talking. 

You may be too busy running your family, or your classroom, or just getting through the morass of your sensory day, to have noticed what's happening with Autism Speaks.

http://25.media.tumblr.com/tumblr_m5l7u3fbRT1rtz29mo1_1280.gif
So here's a quick rundown - Autism Speaks is possibly the most powerful and most wealthy of all the non-profits associated with Autism. They raise vast amounts of money to put into autism research. They claim to know what families need, but they focus only on finding a cure, instead of providing supports to families and autistic people to help them through the experience of living.

They consider autism a disease to be eradicated.

They are a campaigning machine, and push hard for autism awareness - and more people are aware of autism than ever before. But their videos make regular people afraid of autism, exploit autistic children and their families, show only negative views of autistic children screaming and tantruming, even once showed a mother saying she had thought about murdering her son. These ads effectively erase the possibility of acceptance. After all, they are searching for a cure, their goal is to eradicate, so of course they will do what they must to prevent acceptance.

Autism Speaks also refuses to employ people with autism. In one famous situation they almost employed a woman in an administrative role, and she went through several interviews, but when they found out she had an autistic child, they dropped her from their list of candidates for the position. The board deciding what is best for autistics, and influencing the rest of the autism community's direction, refuses to allow in any autistic voice. Sadly, because of Autism Speaks, autistic people are more ostracised than ever before. They are seen as "less than". They are seen as something to fear. They are seen as an epidemic, a disease.

Autism Speaks are definitely not interested in hearing the real voices of autism. They are not interested in hearing what autistic adults are saying all across the world now, which is essentially this: "See me for who I am. My brain is different to yours, not diseased. Accept me, and help me with the things I find difficult. Stop trying to eradicate me, because frankly, that's hurtful and cruel."


-------------------------------

Check out this response to the current ad campaign, written by the mother of an autistic person:

Autism Speaks, I Want to Say....
"Families placed their nonspeaking children before your cameras, trusted you to present their families fairly and your organization again went and turned them into "Jerry's Kids"."
--------------------------------------

22 March 2013

What is Theory of Mind and why should I care?

Theory of Mind is the ability to understand that other people have different thoughts, beliefs and feelings to those of your own. It is the capacity to imagine what another person might be thinking or feeling in any given situation, and the ability to take a guess at their intentions. It is also known as empathy. 

In my observations, for an autistic person, it must seem like the world is filled with a bunch of neurotypicals who have no empathy. Autistics are constantly judged by neurotypicals, punished, assessed for their deficits and weaknesses, stared at, and moulded into different people to who they want to be within themselves. They are told they need to be cured, that the way their minds work is a disease, and is quite simply not acceptable.

To add insult to injury, autistic people are constantly told by neurotypicals that they have no empathy or Theory of Mind.

Can you see the irony here?

Check out this article for a deeper understanding of Theory of Mind and why it matters how we discuss it:

Psychology Today: Guide to Reporting on Autism: Theory of Mind & Empathy

19 March 2013

Challenge the standard paradigm

You don't have to do things the way everyone says you need to.

I know, it's out there thinking, but I know you can handle it. It's completely okay to look at the whole picture and decide on a plan which suits your child. Be unconventional and don't force yourself and your child into a box dictated by others. They aren't living with the circumstances you are experiencing, so they aren't the best people to judge.

http://www.get-covers.com/wp-content/uploads/2012/04/Trust-Your-Instincts.jpg

Above all else, trust your instincts. After looking at your child's needs without all the chatter and influence of other people, if you have a unique solution for your child, then you're on the right track.

Check out this example: Social skills: context matters, for a different approach.

26 February 2013

What is "high-functioning?"

When an autistic person is described as "high-functioning", what does this really mean? It's effectively a measurement of how close to "normal" that person appears on the outside, how indistinguishable from their peers they can manage to appear.

The word does nothing to offer insight into the person being described.

It is certainly not a measure of even how autistic they are, but rather, describes only how well that person can pretend to be like non-autistic people.

Please avoid using high and low functioning labels, as they dehumanise by generalising, and perpetuate negative stereotypes about autistic people, and offer no insight into the person being described.