Some organisations, we parents of autistic children need, come to a standstill during the vacation.
Ofcourse no one can take over important work, as all those people are so very important.
So our letters, applications and other written materials pile up and up, until there's a layback of weeks or even months.
When I saw the deadline nearing of the response to the application for daycare for my autistic son I got the strange feeling that nothing would happen at all.
More than 2 months had passed after I threw the letter in the mail, and more than 4 after the decision was reached we would apply for daycare.
We all thought that he would go there at the beginning of the vacation, for two days a week.
Giving us 2 days of free breathing and maybe even time to take the other children on a few daytrips.
But all we got was a confirmation that the letter had been received and that the deadline was 40 workingdays later.
Now 36 days had past and I had such an intense urge to send them a reminder, that I looked up the email and wrote a nice mail.
The same day I got an answer.
They needed a special identification number and a letter from the council, stating they agree with him not going to school anymore.
The letter finished with the promis that we would get the permission for daycare as soon as the councilletter would be on their desk.
So we've been waiting for two whole months for something that could have been organised within an hour before the summervacation started.
Now we have to wait until the people at the council start working again.
Oh.... this makes me so mad!!
I wonder how long we would have been waiting when I hadn't send the reminder!
I've been asked to write about autism and work.
Maybe this should be a series of posts to go through the whole process of preparing for employment, finding a job, getting it and keeping it.
ASD in this post means: autism spectrum disorder.
Young people who want to prepare themselves for the future, or who want to earn money looking no further than the first pay check and the things they'll buy, just apply for a vacationjob at a supermarket or another place where they have simple jobs available for young people.
They learn from trial and error, listen well to the instructions and ask others when it's not clear what's expected from them.
People with ASD often won't be accepted when they apply for a vacationjob, or they are not ready even to want one.
Because they lack peer contact they won't hear from others about vacancies.
So, with the same age, they lack job experience, which put them often behind their peers.
The present knowledge about ASD provides enough to develop a way to guide people with ASD to a job that fits their abilities, and is challenging enough without discouraging the person.
Here we use a special system to enable people with ASD to get and keep a job.
step 1. Know yourself
Most important is to write down and learn about the good and less good characteristics of the person, regardless of a job.
This will provide a lot of insight in skills that are present and those which need to be learned.
Many people with ASD have troubles planning, keeping a good day and night rhythm, being somewhere in time, estimating time needed for a task, formulating questions, etc etc.
step 1a: improve yourself
Based upon this list of good characteristics and skills and weaknesses, a learning program can be made. Taking about 3 items at a time, during about 3 months.
Most of these tasks can be practiced as part of a normal day program with school, or daily activities.
step 2: Finding out what you want to do.
When it's known what kind of job the young person is interested in, information can be gathered. Realistic ideas about the job requirements can be created,
These requirements can be listed beside the good/weaknesses analysis, showing areas where further education is needed.
Step 2a: train yourself
Many people with ASD need to consciously learn appropriate behaviour as individual elements, need to synthesize them into a chain of behaviours, and they need special training to generalize learned behaviour to other settings.
For some jobs special practice settings are created at a school or as a daycare facility.
Take for instance administration, duties at a reception, and keeping track of stock in a shop.
This can be practiced in a kind of office at school.
Working at a restaurant can be practiced in a real restaurant setting where visitors know they're visiting a restaurant where young people are taught at the job.
Often this requires one tutor to one or two young people.
The tasks, set out in step two are taken into the program at the practice setting.
A boy who always arrives late will be trained to be in time both at home and at work.
To be continued.
July 9 I'll land well before breakfast in London.
Of course I can do with a welcoming committee. LOL!
The return journey isn't booked yet and depends partly on when I'm able to see some of my English friends, how much I have to spend, if we 2 (son of 23 and I) can find an affordable place to stay after the weekend and on how many speaking opportunities are offered.
You can contact me to speak about autism through the contact button at the top of the blog.
Because I've also had quite a lot of success with round table meetings and meetings where I answer questions people have about autism, I also want to offer my presence there.
Round table meetings can either be used to exchange experiences between parents, for instance, or to discuss matters about one person or case with all the people involved in the care for the person: doctors, school, parents.
Because I have 4 autistic children between the age of 16 and 23, and 2 non-autistic children, and their father is autistic too, I have a wide array of experiences to share.
I'm a psychologist, discovered autism in all my children long before their first birthday and even before their vaccinations.
I'm OK with all subjects. And I'm quite willing to travel outside London. (That's why we didn't book a place to stay after the weekend.)
So contact me and we'll work things out.
Michael Buckholtz has been on hunger strike for 30 days to raise funds for his non-profit organisation and to raise awareness.
I've blogged about him before on this site.
At this place I want to thank all bloggers who took displayed the graphics on their site or EC-bought the awareness graphic on their widget.
I also want to thank my fellow twitterers and tweeties, who tried to spread the message.
Getting the media interested in a genuine human being is far more difficult nowadays than it was about ten years ago.
But his message is strung, his humor is powerful, so I won't be amazed that he'll find his way into the hearts of many people.
The local paper of Macon publicized an article about Michael and made a video which you'll find at the right top of their page.
Thank you Michael for all you do for people with autism and for autism families who are struggling with the financial burden of autism.
Let's keep on spreading the word!!!
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.
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
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.
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