Michael Buckholtz hunger strike updates

Michael Buckholtz is on day 29 of his hunger strike for autism.

Read all about it here and in this post.

Not for himself, but for families and individuals who need money to get a proper diagnosis and who have no access to treatment otherwise.

Girls and women, and people from the lower social-economic classes are underdiagnosed.
Girls with autism are often withdrawn or overcompensate their autism, children and adults with autism from the lower social-economic classes are often told they suffer from bad upbringing.
Because there's no proper diagnosis they don't receive treatment.

A lot needs to be done and your help is needed.

The public needs to be informed, not only about the characteristics of autism, but also about ways to find a proper diagnosis and treatment.

Your help is needed.

• To spread the word about this strike (see here for info and banners,) on your blog, on twitter and other social media
• To inform papers, radiostations, shows and TV-stations about the strike
• To motivate others to help
• To donate, even when it's one or a few dollars: here
• To buy his book. See here.
  

I know, it's awful to say, but most people don't care, because their children are healthy and do well at schools and everywhere else.
But many children are unhappy, because they're told every day they should behave better, but they can't.
Autism is a neuro-biological disorder that presents itself in all sorts of ways. In social behaviour, in communication, in understanding the world.
When we diagnose children early we can help them to understand the world better and find a place in it so they can be happy.

Help Michael reach the media so a larger audience will hear his appeal.

Please.









News:
He'll accompany John Elder Robison on some of his lectures in New York
RadioBlogRadio will feature Michael on june 17 on a special radio broadcast



Finally more people on twitter react.

language understanding in autism : new research outcomes

New research shows people with autism have more language problems than only taking things litteral.

Cathelijne Tesink, from the depertment of Psychiatry of the Nijmegen University UMC St Radboud and the Donders Institute for Brain, Cognition and Behaviour.

She knew that people with autism experience problems with complex language, and often can't understand jokes, for instance.
She wanted to know whether the language problems are only limited to complex language or whether basal, implicit language poses problems too.

Because spoken language is embedded in the information the speaker and his voice tranfers, distorted perception of the speaker might interfere with understanding of what's said.
She offered people with and without autism sentences which belonged or didn't belong to the voice who was saying them.
Like a child saying that he always drinks a good glass of wine before going to bed, and a grown up saying the same.

Both groups (those with autism and those without) were aware that something strange happened.
In both groups the brainscans registered activity in the language center of the left hemisphere.
But... in autistic people the same area in the right hemisphere was activated too.
Like their brains needed to compensate something to arrive at the correct interpretation.

This finding is in line with the earlier findings that people with autism take language literally and that they have difficulty interpreting the context of language.
(And it also is in line with my observation that many autistic people need more time to process language and children need more explanation to understand language.)


The brainscans showed another difference.
When processing the correct sentences people without autism activated a brain area that is involved with self reference.
This area is active in the evaluation of oneself and others.
This area was not activated in people with autism.

This is the first time scientific research shows that people with autism use compensating neurological mechanisms even for normal daily language.
Even the most basic levels of language understanding are involved.


This is a huge step forward to a new way of diagnosing autism.

Research was published in: Brain

the whispertest - Less children are cured from autism

Ever done this game:

People are all standing or sitting in a line.

Someone writes down a message and goes to the first person and whispers a message in his ear.
This message is whispered in the ear of the next person, etc etc.
At the end the message is collected and written down.

There's a large chance the message is transformed during the process.

That's what happens with scientific research.

A researcher finds data which are translated into a conclusion about the researched subject.
This conclusion is summarised, and there it goes: the media, all sorts of people, on and on it goes...

You'll understand what the result is. :)

One way scientists battle this problem is very simple:
Mention the source of the information and the place where to read the precise details of the research.

That way relevant information can be found within minutes.

My advice is to do that too when you write a blogpost, an article or anythings else.

Such a little effort for such a great result.

Take the message: "Autism can be cured" or "children can recover from autism."

This message refers to a research presentation at a conference by professor Deborah Fein of the University of Connecticut psychology.
I haven't found the exact text of her presentation, so I have to go by reports from those who attended the conference. (So that's seceond hand knowledge).

The results are from 20 children. (Far from being enough to draw acceptable conclusions.)
The study involved children from 9 to 18.
It's not clear whether the ages also involve the first diagnosis. But I have to assume not, because it was said children were diagnosed before age 5.

I have no access to the diagnostic criteria, which troubles drawing a conclusion.
And I have no idea which neuropsychological tests were used.
Some of those tests will be done better a second and third time, regardless of improvement of the autism.

Interesting is the description of the group of children that showed improvement:
Many have been diagnosed with relatively mild cases of autism, many also have above-average IQs. At age 2, many were within the normal range for motor development, able to walk, climb and hold a pencil.

Interesting is that it was told that in most cases improvement was already seen at age 7.
(Which suggests late onset development, instead of real autism. But again, I haven't seen her diagnostic criteria.)

75% of the children had other disorders, which raises the question whether these children had autism at the time of diagnosis, or displayed autistiform behaviour as a symptom of an underlying problem.

The children all received intensive therapy during the main part of the week.

In fact Fein published nothing new.
Former research conclusions reported 3 to 25% of improvement of autistic behaviour towards acceptable behaviour.
The results of Fein, 10 to 20%, is well within that range.

In fact the media could also have reported:
Less children are cured from autism.

Fein acknowledges that most children will remain autistic, despite lots of therapy and other ways of intervention. With other words 80 to 90% of the autistic children will have to battle autism all their lives.

That pretty opposes all those tweets, blogposts and articles telling me there's a cure for autism.
Ofcourse I want hope, but no false hope.


Do you know where I've found hope?

Here.

Maybe wanting to normalise autistic people is not curing them at all.

What's a good diagnosis of autism?

A good diagnosis is always very important.

We all agree that a good physical diagnosis is of utmost importance.
When someone is told he has a lungdisease he will receive treatment for that specific lungdisease.
When he has in fact a heartproblem, this will deteriorate and the person will die.

we all understand that.

People with autism probably won't die of a wrong diagnosis (but be aware: some treatments published as healing therapies for autism create a risk.).

A wrong diagnosis however leads to wrong treatments, wrong therapies, and even wrong understanding of the subject of autism.
It also causes lots of distress for the autistic person, the family and all people who are dealing with this person.

A diagnosis is a part of an ongoing process of observations, realizations, descriptions, expectations, therapies and treatments, leading to development of the person and adjustment of the social environment to the needs of the person.

A wrong and incomplete diagnosis has huge implications.
Children might not get the support they need or be subjected to treatments and therapies which are unnecessary.
Even though the autistic person might seem to improve, because behaviour fits better in society, a balanced development may be at risk.

Especially in this time, when groups of people are all over the media and internet telling others how their children have improved or even have been cured, the wellbeing of autistic children is seriously at risk.
Not because people can't afford the expensive treatments, but because those treatments contain the risk of interfering with healthy physical development.
We need to be aware of the fact that these consequences often need a long time to build up and come to visible expression.

I don't argue some children show remarkable improvement.
But that doesn't mean all children with the same autism diagnosis will react the same.
When diagnosing autism only involved a limited array of examinations, deficiencies and other problems might have been missed.

Another reason good diagnosis is important is that we need to get reliable information about the number of cases, and we need to develop the knowledge about autism as fast as possible.

Some researchresults can't be compaired because different and/or imcomplete diagnostic protocols (sequence of steps) are used.
When measuring cummunication for example it's important to know that all researchers use the same definitions and are talking about exactly the same.
Otherwise we're compairing classic autism and high functioning Aspergers for instance, apples and pears, and we don't even know it.

A well conducted diagnostic procedure can be repeated and lead to the same conclusions.
Only that way we can measure progress within the person.
Only than we can rely on the claims that certain treatments are of benefit to autistic people.

The past years I've had many questions from parents who don't know where to go for a proper diagnosis.
Teachers, social workers, pediatricians, neurologists and others are not able to make a reliable diagnosis. Nor are chiropractors, nannies, grandmas, and family doctors.
Because a good diagnosis is so very important it needs to be conducted by a well trained and specialised professional who is also able to give sound advice about treatment options, and who is able to organize proper referral.
In case of autism this needs to be a certified psychiatrist who is specialised in child and adolescent psychiatry, with the assistance of a team consisting of specialised (and certified) psychologists, and others.

So a good diagnosis requires:

1. to rule out all medical problems as good as possible.
   Like vitamin deficiencies, gluten intolerance, epilepsy, metabolic diseases, brain damage etc etc. (if necessary start treatment and record results.)
   
2. a good description of existing medical problems
3. constructing a careful and well controlled family history
   
4. ruling out all other psychiatric problems (by certain tests and other means)
   
5. careful questioning parents, family members, teachers etc. about their observations.
6. careful questioning parents, teachers and professionals about what they have done, treatments, etc and the results.
   
7. observation with one way screen so the child can be observed without strange people in the room. If possible observation of communication with parents, and later alone with stranger. If possible during play, during structured and unstructured tasks.
   
8. This all should be done by certified psychiatrists and psychologists specialised in children and adolescents.
   
9. The diagnosis should be made based on the DSM (diagnostic and statistical manual of mental disorders) which is most recent. The number of the DSM should be mentioned, as well as the number of the diagnosis.
10. The diagnosis should be verified every 2 years. Because of the advance of science, but also because change and additional symptoms will be documented.

Yes, it's quite some process.
But this is the best way to do your child justice.
With a good diagnosis it's easier to make a choice for the best treatment, and no time is lost trying other things.

The earlier and the better your child is diagnosed and the earlier proper treatment starts, the easier your child moves through life.

California - autism rising?

Today the autism twitter community was buzzing about the rise of autism cases in California.

It made clear no one bothered to read the article of Mercury News.com written by Sandy Kleffman.

OK, the title created the misunderstanding.
"Autism in California increases twelvefold" it said.

But why people retweet articles without reading them is a big question to me.
Why send your friends a text you haven't read yourself?

The first sentence states:
"California saw a twelvefold increase during the past two decades in the number of autistic people who are receiving services through regional centers, a new state study reveals."

This simply means that more people with autism have turned to the regional centers for support.

This doesn't mean that the number of autistic people has increased.


What bothers me in the article is the definition of autism.

"Autism is a severe developmental disorder marked by communication difficulties, an adherence to routines and a lack of interest in socializing with others."
Many autistic people, and we're talking classic autism here, don't have a lack of interest in socializing.
Because of their communication difficulties, they problems understanding social processes and the lack of acceptance they encounter, autistic people feel not well equipped to socialize.
Many do feel an inner longing to belong to their peergroup, to other groups, to have friends, but they sense a distance they can't bridge themselves without support.
It's one of the reasons autistic people seek help at support centres.

The deputy director of the community services and support division of the state Department of Developmental Services, Julia Muller, is cited in the article.
She states that her agency has developed guidelines on diagnosing autism and effective interventions.

What we need to be able to get comparable diagnoses is one clear system.
Not each division making up it's own rules.

The DSM IV, and preferably it's revision the DSM-IV-TR needs to be used to reach proper diagnoses.
These guidelines are developed by experts and are only open for discussion as long as the development of DSM 5 is concerned.

Michael Buckholtz on hunger strike for autism

more info here.

Sometimes someone can be caught by such a strong inner urge that nothing, nothing can stop him.

When I met Michael Buckholtz at Twitter, I felt this is one someone special.

Oh yes, he is.

He was diagnosed with high-functioning Asperger's Syndrome and OCD and he battled all the battles children, adolescents and grown ups with that diagnosis are faced with.
Like in my family all males in his family had their own unique form of austism.

His perseverance and his positive attitude made him into a caring person, who fully understands the problems autistic people and their families are dealing with.

One of the main problems is finding enough care, support and therapy.
It simply costs too much money to do what's needed.

Michael founded the AACF, INc. The Aid for Autistic Children Foundation, Inc.
It's a non-profit organisation which aims to reduce the financial burden on families.

But he does more.

Today he started a hunger strike to bring the needs of autistic people to the attention of the media, the governments and to all who need to listen more.

Each day he will blog about his condition here at his blog.

There are several ways you can support him.

I don't think you can talk him out of the hunger strike, but you can report his efforts to your local media, because austism concerns us all.

You can blog about him, and about autism.
When you don't know what to blog about, just get in contact with Michael, with an autism family in your neighbourhood or online, or with me.

Buy Michaels book.
He knows what he's writing about.
You can find everything about it here.

Michael is at twitter: @TheBuchNation and @Aid4ASDKids

I wish Michael will reach his goals.

Let's all help him!!

Download this image to your computer and upload it to your site.
Link it to:
http://autismsupportnetwork.leveragesoftware.com/blog_view.aspx?CustomerID=buckholtz








Top one without white border:

...and

I can put your name on this 125x125 button for you.
Please mail me with the subjectline: custom button for me, with your name and email.



This button can be used in your sidebar, linking to one of the sites of Michael or here, and on entrecard, for instance.

Buttons are constructed on people when they're alive. Autism is inborn.

Now there's so much publicized about autism I meet many people who know it all.
Even the media embrace without criticism people who claim their son or daughter suffers from autism, and especially those who claim to have found a cure get a place in the centre, right in front of the camera of microphone.

They are presented as beacons of hope, whereas they're in fact they're lights from hell burning on earth.

Firm words, I know.

Why I used them?
Because I want to warn people.

Children who have autistic features (or autistic characteristics as some people prefer) are not necesarilly autistic or suffer from an autism spectrum syndrome.
Braindamage, due to hypoxia during birth, a car accident or a disease, can cause symptoms that mimick those of autism, without being autism.

The effects of autisticlike features caused by a carcrash can be reversed.
That's why miracles seem to happen.

So my advice, as a specialized psychologist, is to listen carefull to the stories people tell.
Seizures are not a feature of autism, for instance.

It's nice that people stand up for autistic children and their parents, but bringing the message of miracle cures, of success of the effort to heal their child, give some people the idea that parents are not doing all they can for their children.

I've had that feeling too.
It was like my sons have a button somewhere that needs to be pushed and I can't find that button to delete their symptoms.

And even more painful: I've been told by people I'm not dealing with the autism of my sons right, because they only improve so little over time. I'm not only a lousy mom, but also a failing psychologist.

Sorry, buttons are constructed on people when they live. Autism is inborn.

The other day I read about cerebral palsy.
It was a historical account, telling about the early days when the diagnosis cerebral palsy couldn't be verified as well as in this century.
People only needed to exhibit a tremor and panic was created.

Now cerebral palsy is a well described clinical diagnosis, with a clearly structured treatment.

I'm sure we're headed that way too, and in due time we're freed from the socalled miracles people bring in the news.

I'm looking forward to it.

cooking lessons

He's angry.

Because he wants to learn to cook, and I welcome the idea of boys being able to make something for themselves, he helped me making dinner the past three days.

One day he got me a package of spinach from the freezer.

Nothing special for normal kids of 16, but when you're autistic it's quite something to open a door and put your hand between all sorts of slippery and icy things.
He hates it, but because getting all the ingredients belongs to cooking, he took the package out.

The next day he boiled water and put the spaghetti in it and kept a close watch on the clock.
It nearly smashed my nerves.
Being updated of the time every 3 to 5 seconds during 11 minutes by someone with a loud voice doesn't feel good.

But we both managed...

And yesterday he boiled the eggs.
I thought 4 minutes of time-updates were enough. LOL!

This morning he was still proud of his accomplishments and told us over and over again we would have starved without him.
Which is ofcourse quite an understatement

The girls told him they liked his help, his father told him he should also cook dinner today.
It was meant as a compliment,
but it turned out a complete chaos, because son felt that people in the house were using his talents for their own good (wow!), etc etc.

He doesn't have meltdowns very often anymore.
But today he did.

And because he quit his meds a few weeks ago, there was nothing that helped him to be in control of his emotions.

After saying all sorts of painful things to those who are at home, and yelling a lot, he's now complaining his computer doesn't work anymore.

I'm not ready to have a look.

And I'm certainly not ready to have his father have a go at him because he broke his computer.

Last time he pulled a plug out and I was the one to "diagnose the problem", because the help of 4 males didn't do any good but stir emotions even higher.

Oh, and by the way, I'm the one to cook tonight. No eggs, no spaghetti and spinach. But potatoes, red cabbage and sausages. Because I like it!



update:
Nothing wrong with his computer, the rolling shelf the keyboars stand on got stuck because a screw was a bit loose.

autism and a job

Whereas the American and English media spend a lot of attention on autism awarenss month, the attention in the Dutch media was short lived. At the end of the month the Mexican Flu completely pushed the whole subject aside.

Thanks to the enormous amount of tweets and blogposts, mainly in the english language, we got a lot of questions during autism awareness month.
It can be seen that basic knowledge is more available to a broader public, because we got a large diversity of questions.

One cluster of questions was about autism at work and autism among grown-ups.

We use the word "autism", but in fact we mean the light forms of autism spectrum disorders we can find among people who are participating in the workforce. Most of them are not diagnosed.

Because knowledge about the characteristics of autism has become wider available, people with an autism spectrum disorder or autistiform behaviour are spotted more easily.

During email and other conversations irritations about having to instruct certain people over and over again, changed into the wish to assist the employee and to describe the task adjusted to the person.

Irritation changed into self-relfection and adjustments.

We gave advices which were completely focussed on individual circumstances, but a few general guidelines can be given. (You'll recognise them from those used in schools.)

• Use clear language. (Many autists take language literally)
• Use pictures, schemes, etc.
• Split complex tasks into simple ones
• Describe the final product.
• Provide clear time-schedules
• Provide time for exercise. (A well exercised skill is never lost and the investment will be earned back.)
• Ask your employee whether he's found his own way of dealing with the task. Different is not always worse.
• It should be clear when initiative is expected and to whom the employee should turn to.
• Some people night a fixed routine. They need time to adjust to breaks, to working again after a vacation.
• Not all people are able to recognize faces. Uniforms can prevent recognition of fellow employees. (Use a visible and readable badge)
• Write down appointments and other information.
• Maybe the employee needs some extra attention during breaks.
• Stay positive. That's best for everyone.
  

English government asks advice

Parents in The Netherlands who have tried to bring the subject of autism to the attention of the government receive either no, or a kind of general answer.

Even though the attention for autism is growing, it's still minimal.

In the UK government asks people to give their advice how to improve life for adult autists.

See here.