- The Guardian, Tuesday November 11 2008
Archive for January 7th, 2011
First Published Wednesday, 12 November 2008
Why don’t you understand?
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A new report on educating autistic children finds schools unable to cope and parents frustrated
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Teachers’ tolerance levels were never very high where John Davis was concerned. The boy, who has autism and dyspraxia, was noisier than many other children with his condition and would become frustrated easily, especially in a confined space.
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“John was perceived as being badly behaved and I would receive phone calls from the school telling me what he had done now, rather than asking me for advice on how to deal with it,” says his mother.
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“He had a statement of special needs from the age of four and was assigned a learning support assistant when he went to primary school, but she was more like a babysitter who was there to control him and take him out of lessons if he got disruptive.”
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The Davis’s story is fairly typical of the experiences of thousands of families with autistic children.
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Struggle to teach
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A report from the University of Birmingham’s Autism Centre for Education and Research, published today, shows that too many teachers and support staff are unfamiliar with the needs of autistic children and struggle to teach them effectively.
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“Teachers expected him to behave like everyone else, which was impossible,” says John’s mother. “Even though his primary school had a resource base for children on the autistic spectrum there was a fundamental lack of understanding of the condition. It wasn’t the fault of the staff. They just didn’t have the training.”
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The Birmingham study is thought to be the first to examine jointly the experiences of families and schools in dealing with the condition.
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Autism, which affects about one in 100 children, is thought to be triggered by a combination of genetics and environmental factors.
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Autistic people are described as being “locked in their own world” and struggle to communicate with others. They usually have heightened or lowered acuity of the senses and can display repetitive behaviour. Those affected often have other learning difficulties, such as dyspraxia, or may exhibit compulsive behaviour.
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The study finds that while the academic provision for children with autism has “improved tremendously” in recent years, much remains to be done.
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Practitioners trained in autism education say that one of the biggest challenges is a lack of knowledge and understanding among schoolteachers.
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John’s mother agrees. Strategies that might have helped John to make academic progress, such as a sloping writing board to help address his motor difficulties, were ignored by the school.
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“Often it is the simple things that need to be put in place to make a difference,” she says.
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The report finds that, despite the government’s policy of inclusion of pupils with special needs, mainstream schools find it difficult to integrate pupils with autism. Pupils had often been sent there against the wishes of parents, who wanted more specialised provision.
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One parent told researchers: “For a child to be successful in mainstream school, the school must want to make the most of every opportunity for the child and include the parents.”
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But instead of recognising the atypical development of children and young people on the autistic spectrum, teachers tend to view them through a “typical lens”, comparing their behaviour with children who do not have the condition. Some, like John’s teachers, believe they can force autistic children to behave as other pupils do, or that it is a condition that they will grow out of.
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There is also general confusion about autism. Teachers do not realise, for example, that the challenging behaviour can be accompanied by high intelligence.
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One father describes in the report how his seven-year-old son, who has Asperger’s syndrome, another condition on the autistic spectrum, has been deemed to be “too bright” for support, and yet “he can’t work with other children and he struggles to understand some instructions”.
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The report says that autistic pupils make the most progress when teachers provided an individualised programme that addresses specific social, personal and learning difficulties.
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A perceived, or otherwise, lack of support from school often leads to difficult relationships between the child’s home and teachers. The study finds that parents are often left to fight alone for the right education for their child and to deal with the effects of autism, leaving them “emotionally and physically exhausted from the constant demands and the harrowing situations they experience”.
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John’s mother describes how her own struggle to get her son the education he needed was met with bureaucracy, endless form-filling and meetings with panels of experts. “It can be very frightening, and you are made to feel vulnerable and like a bad parent. It is so daunting,” she says.
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Dr Glenys Jones, who led the team of researchers, does say there is cause for optimism. “There are some examples of good practice in schools, but this needs to be better disseminated,” she says. “There is no one-size-fits-all strategy because each autistic child is different. Not every child will need a specialist school or unit.”
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From next March training materials will be available under the government’s Inclusion Development Programme, aimed at those working with children on the autistic spectrum.
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The study concludes that those working with autistic children need specific knowledge of their individual needs and to provide the appropriate support, and that there should be “effective engagement” with their families.
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Good progress
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John’s mother says her son is now in a new primary school with staff who can support his needs. “He is happy and making good progress, but it has been a struggle to get him there,” his mother says.
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Bob Lowndes, chairman of the Autism Education Trust, which commissioned the study, says: “There is a growing commitment from education professionals to respond to the needs of children with autism, and provision now is much better than it used to be. Teachers continue to find it difficult to access the appropriate training to enable them to frame their knowledge of individual children with a real understanding and knowledge of the condition, and this needs to be addressed.”
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Lowndes hopes the findings will shape future provision. “The report should have real value, not just for teachers and other professionals working in schools, but also policy-makers who have responsibility for framing services in their area,” he says.
[This article was amended on 28 June 2011. John Davis, a pseudonym, was substituted for the name of the child featuring in the report at the request of the family.]
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I used to be a teacher for children with Autism in a private school setting. Although we used many tools to assist students with Autism, the emphasis was still on making children behave “normally” enough to be able to attend a mainstream educational facility. If we were unable to do so, both the teacher and the student were branded as “failures,” and were “encouraged” to “leave” the school setting for a “more appropriate environment.”
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This is why my heart is gladdened by your blog. I’m not a “regular” reader, but I do drop by when I see something in the “community” pages that twigs my interest. Having kept up with you for the last few months, I’d like to thank you for all of the research that you are generous enough to share. Although it reminds me that there is still much work to do to help people understand about the nature of Autism, and the discrimination that people who are on the Autism spectrum face every day, it heartens me that there is someone out there like you – someone who recognises that people with Autism are just like everyone else … unique in their own right, and as such, are worthy of respect. It still really gets me that “normal” people have such a sense of entitlement to this respect for their differences, yet they will deny it to everyone else that falls outside of this sphere.
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Anyway, enough of my rambling … I just wanted to tell you that you are doing a marvellous job to raise the consciousness of people in the community about Autism.
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2. Julie left…
Thanks for taking the time to stop by Kim, and for the kind words. While there are some wonderful teachers, advocates and organizations doing their best to promote a positive attitude toward difference out there and who share the message ‘never underestimate the potential of the individual child’, there is undoubtedly alot of room for improvement in both attitude and understanding from a host of others. Your thoughts and attitude make a difference – thankyou. It was lovely to hear from you.
First Published Saturday, 15 November 2008
SAN ANTONIO – When a child is sick, most parents think relief is as close as the doctor’s office. But, many parents here tell us their children have been turned away by some medical professionals. News 4’s Leslie Bohl Jones investigates why a certain diagnosis may be the reason doctors are turning these young patients away.
The newest numbers show one in every 150 children has this condition. And because of that diagnosis, necessary medical care can be very difficult to find.
Little Kay wants to play like a typical two and a half year old, but her brain works differently than most children.
She has autism. Autism is a neurological condition where she processes information differently than others.
An occupational therapist and a speech therapist help little Kay maximize her words and actions. In addition to autism, she faces another common childhood problem. One that keeps her up most hours of the day and night!
“There are other times for anywhere from an hour to two hours she just goes (gasp), and it’s extremely scary,” says Kay’s mom, Rebecca Ferrall. “She is either not breathing or making funny noises or snoring, so she only sleeps a few hours a night.”
Kay’s tonsils need to come out. Breathing and snoring make sleeping a challenge for her and her family.
Desperately looking to help her child rest, Rebecca found a reputable surgeon. But she says she was stunned when the doctor flat out refused to perform the surgery. The reason? Kay’s autism.
“I was in shock,” says Rebecca. “First of all, that he had made a comment as a doctor that ‘those autistics’ don’t drink well after surgery. My 7-year-old had the surgery a year before so I know it’s all children who don’t drink well.”
Rebecca claims a second doctor also turned Kay away, because of her autism.
“I was very angry,” adds Rebecca. “I just cried because it was something she needed so badly and they weren’t going to do it. Just because of a label.”
Rebecca is not alone.
Maritza Craig has been there, too. She has experienced the same bias against her autistic son, Emilio.
“The doctors really don’t want to deal with these special needs kids because the behavior,” says Maritza. “So the easy way is to just deny [them].”
Psychologist Josue Gonzalez works with families impacted by autism. “As parents we expect the fact that whatever our child needs, we will be able to find and the reality is very different,” he says.
When asked if he is surprised to hear that doctors have turned away autistic children as patients, Dr. Gonzalez says, “No, I am not surprised. If anything, I think it identifies a much larger issue, which is that how it is that professionals should learn how to work with special needs children.”
It’s such a problem that Any Baby Can, an advocacy group for special needs children, had to put together a list of doctors and other professionals who will treat children with special needs.
“The issue is working toward developing programs identifying individuals who have such expertise and learning how to maximize those resources. But it’s not sufficient. We need more,” says Dr. Gonzalez.
After months of trying, Rebecca has found a surgeon who will remove Kay’s tonsils. But first, she must undergo some testing and it may be months before Kay and her family get the rest they need.
Rebecca hopes raising awareness will help parents of all children. “You are your child’s best advocate and never give up.”
News 4 did check with the Texas Medical Board which states a physician can refuse to treat any patient he or she chooses, except in the case of emergencies. That is in accordance with the American Medical Association.
To see the list produced by Any Baby Can offering resources to parents of autistic children, click here. Advocates hope that list will only grow as awareness is raised.
You can also check out Respite Care’s website, a school for special needs children that is located north of downtown in the Monte Vista neighborhood.
VIDEO/SOURCE:Â http://www.woai.com/content/troubleshooters/story.aspx?content_id=53565605-c58a-4d62-995a-5b1281b7ed2b&rss=322
First Published Saturday, 15 November 2008
The World Federation for Mental Health (WFMH) has published a comprehensive 40 page toolkit “Understanding generalized anxiety disorder” to help people understand this debilitating disorder.
The publication provides up-to date information about generalized anxiety disorder (GAD) in both adults and children, its current treatments, and the effects of stigma on those living with the disorder. Through the information presented, the toolkit aims to educate and inform those with GAD, their physicians, families and friends, and the general public about a condition that affects the lives of millions of people, and results in marked disability and significantly impaired quality of life. In addition to the information about GAD, the toolkit also contains a list of national and local organization which can be contacted for further information and support.
“Although common, generalized anxiety disorder is one of the most misunderstood mental health conditions due to its close association with other disorders,” said Stuart Montgomery, Imperial College School of Medicine, London. “It is up to all of us to raise awareness and understanding so that those with the condition can receive appropriate treatment.“
A major focus is to raise awareness about this condition and consequently reduce the stigma associated with GAD, so that more people can seek and receive appropriate treatment. Currently it is thought that only around 50% of people with GAD seek treatment which may have masked the true incidence of the disorder. This may be partly due to the social stigma surrounding the condition, but also due to misdiagnoses such as normal stress and hypochondria.
GAD does not discriminate between ethnic or socioeconomic backgrounds, with millions of people across the world living with its devastating symptoms. It is a syndrome of ongoing excessive anxiety and worry about every day matters. Physical symptoms include: fatigue, restlessness, difficulty concentrating, headaches, muscle tension and aches, trembling, irritability, sleep disturbances, sweating and hot flushes. It is often accompanied by depression or other anxiety disorders – and it has a substantial negative impact on quality of life, productivity at work, and healthcare costs. The disorder is common with a lifetime prevalence of around 8%.6 Currently, the causes of GAD are unknown, but it is thought that the levels of different neurotransmitters in the brain may play a role.
The GAD toolkit is produced by the WFMH and supported by an unrestricted educational grant from the pharmaceutical company AstraZeneca. It can be download in PDF format from:
http://www.wfmh.org/PDF/GAD%20Body-Toc%20cx.pdf
First Published Monday, 17 November 2008
Autreat is a retreat-style conference run by Autism Network
International, for autistic people and our families, friends,
supporters, and interested professionals. We are accepting
presentation proposals for Autreat 2009, to be held Monday-Friday,
June 29-July 3, 2009, in Bradford, Pennsylvania (approximately 80
miles from the nearest major airport at Buffalo, New York).
FOR HELP PREPARING A PROPOSAL:
If you want to submit a proposal but you have trouble reading these
instructions and putting your proposal in the requested format,
contact cfp-help@autreat.com for help. Send only
plain text messages, with no attachments.
WHAT KINDS OF WORKSHOPS ARE WANTED AT AUTREAT?
Autreat is very different from typical autism conferences:
WHEN PREPARING A PROPOSAL FOR CONSIDERATION, BE AWARE THAT THE
*PRIMARY* AUDIENCE AT AUTREAT IS AUTISTIC PEOPLE.
Parents and professionals do attend, and most who attend find the
presentations to be of interest, but Autreat is basically autistic
space.
Be sure your information is being presented in a manner that is both
helpful to and respectful of autistic people.
We expect that you will be speaking *to* us, not speaking to
non-autistic people *about* us.
We are interested in presentations, by either autistic or non-autistic
people, about POSITIVE WAYS OF LIVING WITH AUTISM, about functioning
as autistic people in a neurotypical world, and about the disability
movement and its significance for autistic people.
We are interested in educational and informative presentations, not in
sales pitches for a presenter’s products or services. If you are
representing a commercial enterprise and would like a forum to sell
products or services at Autreat, please contact us for information
about attending Autreat as a vendor.
We are *not* interested in presentations about how to cure, prevent,
or overcome autism.
We do *not* appreciate having non-autistic people come into our space
to talk to each other about how difficult we are to deal with, or how
heroic they are for putting up with us.
If your presentation is geared toward the interests of parents or
professionals, it should focus on positive ways of appreciating and
supporting autistic people, not on reinforcing negative attitudes
about autism and autistic people.
AUTREAT AIMS TO BE WELCOMING AND RELEVANT TO THE BROADEST POSSIBLE
CROSS-SECTION OF THE AUTISTIC POPULATION.
Autreat is attended by autistic people who speak and by autistic
people who do not speak;
by autistic people who communicate fluently and by autistic people who
have limited communication;
by autistic people who live independently and by autistic people who
need intensive support with daily living;
by autistic people who have jobs and by autistic people who live on
disability benefits;
by autistic people who are able to present as “socially acceptable”
and by autistic people who require support to help them manage their
behavior:
by autistic people who have been labeled “high-functioning” and by
autistic people who have been labeled “low-functioning”—including some
autistic people who have had *both* labels, at different times or
under different circumstances.
While it is not expected that any one presentation will be of interest
to each and every autistic person, we do look for presentations that
will appeal to the widest possible audience.
We are *not* interested in presentations that reinforce what we
consider to be artificial distinctions between members of our
community who are labeled “low-” vs.”high-functioning.”
A NOTE ABOUT “PERSONAL EXPERIENCE” PRESENTATIONS:
Be aware that everyone at Autreat either knows what it’s like to be
autistic, or knows what it’s like to care about someone who is
autistic.
All of us have our own personal stories. Presentations about the
presenters’ personal stories are not going to generate much interest,
unless you’re able to use your story in a way that will help other
people to share and understand their own experiences in a new way.
Your proposal should describe what participants can expect to get out
of your presentation, not just what personal experiences you’re going
to talk about.
TO LEARN MORE ABOUT PRESENTATION TOPICS OF INTEREST
If you have never attended Autreat before, please review the ANI web
site (www.ani.ac) and the past Autreat brochures
(http://www.ani.ac/past-workshops.htm), and contact Jim Sinclair
(jisincla@syr.edu) if you have questions, to make sure you understand
what Autreat is about and whether your topic is relevant to ANI’s
philosophy.
WHAT IS EXPECTED OF PRESENTERS?
If you submit a proposal, we expect you to be available to attend
Autreat if we accept your proposal, and to give your presentation on
the day and time scheduled. We make every effort to accommodate
presenters’ preferences in setting the Autreat schedule, but it is not
always possible to give every presenter his or her preferred time
slot.
Presenters are expected to send advance copies of any handouts or
slides they plan to use, so that we can prepare alternate format
copies for print-impaired attendees.
Presenters are asked to submit an article on their topic for inclusion
in the program book. These also need to be submitted in a timely
manner, so we can prepare copies in alternate formats.
Presenters are expected to consent for their presentations to be
recorded, and for the recordings to be sold by Autism Network
International.
Presenters are invited to attend all of Autreat. If presenters opt not
to attend the entire event, they are expected to arrive on-site by
8:30 a.m. for afternoon presentations, and to arrive the night before
for morning presentations.
Please be prepared to meet these expectations if you decide to submit
a proposal.
WHAT’S IN IT FOR THE PRESENTERS?
Individual Autreat presenters receive free registration for Autreat,
including on-site meals and lodging in a shared (2-person) room. (A
private room may be available at the presenter’s own expense.) This
free registration is for the presenter *only*, not for a presenter’s
family members or support staff.
In the case of panel presentations consisting of three or more
presenters, we offer one complete four-day Autreat registration, plus
a single-day registration (including three meals and one overnight, if
desired) for each additional panelist. Therefore, a panel of X
presenters is entitled to a total of 4+(X-1) free days/overnights.
Panelists may divide these free days amongst their members as they
wish. Panel presenters are of course welcome to register and stay for
additional days, at their own expense.
ANI is a volunteer-run, member-supported grassroots organization with
minimal funding. We cannot reimburse for off-site expenses, nor can we
pay travel expenses or honoraria. If your proposal is accepted, we
will send you a formal letter of invitation if this would help you in
raising your own travel funds.
Presenters are entitled to receive one free copy of the recording of
their presentations.
PROPOSALS SHOULD INCLUDE:
* Your name and title (if any) exactly as you want them listed in
program materials should your proposal be accepted
* Contact information (address, phone, fax and/or email if you have them)
* Title of your proposed presentation
* Detailed description for consideration by the Planning Committee
* Brief (5 sentences or less) abstract exactly as you want it listed
in program materials should your proposal be accepted
* Indicate ONE theme that BEST relates to your proposed presentation:
[ ] Advocacy skills
[ ] Life skills/adaptive strategies
[ ] Helpful support services
[ ] Communication
[ ] Social/interpersonal issues
[ ] Personal/self-awareness/self-development issues
[ ] Autistic community and culture
[ ] Education
[ ] Employment
[ ] Family issues
[ ] Residential issues
[ ] Disability rights and politics
[ ] Autism research and theory
[ ] Other (describe):
* Indicate which group(s) you believe would find your proposed
presentation of interest. Check as many as apply. Briefly describe
what your presentation would offer to each group:
[ ] Autistic adults
[ ] Autistic teenagers
[ ] Family members of autistic people
[ ] Educators
[ ] Clinicians
[ ] Service providers
[ ] Other (specify):
* Brief (5 sentences or less) presenter bio exactly as you want it
listed in program materials should your proposal be accepted
* Any audiovisual equipment you would need for your presentation
If you have never presented at Autreat before, please also include an
introduction for the Planning Committee summarizing your relevant
experience, including any presentations or other education/advocacy
activities elsewhere, and the nature of your interest in autism and/or
in general disability issues.
PROPOSAL DEADLINE:
February 15, 2009
HOW TO SUBMIT A PROPOSAL
Proposals can be submitted via email to proposals@autreat.com, or via
postal mail to ANI at the address below, or submitted online at
www.ani.ac/aut09cfp.php.
WHAT IF I DON’T WANT TO PRESENT, BUT I HAVE AN IDEA FOR A PRESENTATION
I’D LIKE TO SEE?
If you want to make suggestions for Autreat presentations, or make
comments about previous presentations or presenters, please fill out
the questionnaire available at www.ani.ac/autplan2.php.
Autism Network International
P.O. Box 35448
Syracuse NY 13235
USA