Amy Nelson

Wednesday, September 07, 2005


Tuesday, February 22, 2005

Protests Against NBC's Autism Series

NBC has had an autism series this season, comprising of documentaries, biographies, and medical information for their viewers.
While pleasing and informing to some, the nature and perspective of the shows have disappointed and angered some members of the autistic community.
Many adults with autism and asperger's dislike the attitude that autism is a condition that requires a cure. They prefer to seek acceptance and wish to educate members of society that autism is not a disease, mental illness, or epidemic, but a neurological difference that can have benefits.
Adults with autism are asking for help with services, housing, employment issues, but not for the miracle cure that some parents think would be best for their newly diagnosed children.
Joe Mele, an autism rights activist who protested against the NAAR walk on Long Island in October, has protested again - this time against NBC's coverage of autism issues.

He has become well known for his protest against NAAR and their search for a cure for autism.
His protest has been described as a pivotal moment in the history of autism rights, and he has been compared to Rosa Parks for his peaceful protest, the first ever by a person on the autism spectrum against those seeking a cure.
Joe Mele has today protested at a live broadcast for NBC with signs stating his views. He has tremendous support from the huge online autistic community, some of whom are semi or non-verbal and use the many forums and chatrooms to express views and ideas.

Mr.Mele has also put his money where his mouth is and asks patrons of his open source software to donate to a group he is a member of. He supports the work of Aspies for Freedom and has written of his NAAR protest on the website -

Many autistics are unhappy with the new charity launched by NBC called Autism Speaks. Considering he fact that many autistics are semi or non-verbal it seems an ill fitting name, and the drive towards research for a cure upsets many too.

There have also been protest phone calls to the NBC helpline, and criticisms written of the alarmist talk of an epidemic of autism. There has been increased diagnosis and awareness of autism spectrum conditions, previously many were labelled as retarded and given less help and services. This does not create an epidemic however, and a recent report from the Mayo clinic confirmed that there was no link with MMR, mercury, or reasons for the increase other than better dianostic techniques.

Most of all the adults on the autism spectrum seem to desire more education of autism matters that is not sensationalist and dramatic, but simply shows their neurological differences and allows others to accept them.

Saturday, January 29, 2005

This website is part of the autism-assembly, this is a coalition of members of the autistic community who share the common goal of seeking acceptance for those on the autistic spectrum, who aim to educate about autism, and who are not seeking a cure for autism. This is part of the global autism rights movement.

Tuesday, January 25, 2005

The Cure Autism Report

"There is a great debate currently on the issue of finding a cure for autism. Parents seek it as an answer to their childs autism, yet there is a movement of adults with autism that puzzle some, as they say that they do not want a cure to be found.

Autism is a spectrum condition, some people are non-verbal, some use other forms of communication such as sign language, some are able to speak, but find social comminucation very difficult. It affects each person with autism in a unique way. It is not a mental illness, but a neurological variant from the norm.

Some people question the attitude of adults with autism who state that they do not want a cure. There are many personal reasons that an individual may have for refusing to support a cure, but if we look at this in comparison to other conditions, and try to reach a logical conclusion about what a cure may be, I think there is strong evidence for those on the spectrum to be concerned.

Cure Autism Now state on their website that they are looking for a cure or prevention for autism. Prevention would most likely be pre-natal testing and abortion, as it is known that autism is predominantly genetically inherited.
As autism is part of the actual brain structure, a cure, or treatment that was tantamount to a cure, would most likely be in the form of a medication. This would be similar to the type of treatments that are used for depression, schizophrenia, and bipolar, I surmise this because these are treatments that act on the chemical reactions in the brain, such as inhibiting serotonin uptake, in order to affect behaviour.
While autism is not a mental illness, it is considered by many to be in that category, and to require treatment.

If we picture a scenario in five years time, a medication has been developed that will be used to cure autism, and that it acts on specific chemicals in the brain. It increases desire for communication, it takes away obsesssive interests, it extends the use of imagniation in play and work, and it takes away any need for strict routine following.
People marvel at it, and parents want their kids to take it.
Then we come to administering it, and adults on the spectrum are asked to try it, anyone on the spectrum going to their doctor would be told to try it, "you want to be helped dont you?"

Those that try it find that their interests that fascinated and excited them are no longer fascinating. The appeal is gone and enjoyment of it is dulled. They have the desire to talk more to people, but nothing of interest to discuss now that their interest is gone. They find that they dont need a routine as much, and plod on with life like an average person. Imaginative ideas may come to mind for them, but their inner reality and whole way of thinking that was unique is gone. Their thoughts now seem in black and white, instead of colour. They are now normal thinkers and this is strange and foreign to them.

Some people refuse the medication altogether, wanting to retain their personality and way of life, and some people start taking it, then stop. There could be side effects that are imparing, such as with many drug treatments.
Comparing this scenario with similar treatments available now for instance with schizophrenia, its possible to make a comparison to what may happen.

These are comments from people with schizophrenia-

"I have been recently diagnosed with paranoid schizophrenia and am currently being treated by mainstream therapies. I am forced to take medication, but object to taking any mind-altering substances."

"I have been diagnosed as schizophrenic by psychiatrists. I have been out of hospital and have not taken any medication for 2 years. The psychiatrist is now trying to force me to take medication."

This is an extract from an article called "Forced medication is inhumane"

"Should the mentally ill be allowed to refuse to take their medication?
States have always had legal methods for committing disturbed people to psychiatric facilities and a process for forced drug treatment in that environment. By passing involuntary commitment legislation, states are asserting the right to demand that people living in the community take ''antipsychotic'' drugs, which represents a profound expansion of state control over the mentally ill."

Extract from another article-

"Ten years ago, after a series of "psychotic" episodes, I was diagnosed as "manic-depressive" and told that I would have to be on Lithium for the rest of my life"..... "As a patient, I was battered by psychiatric aids, locked in empty rooms, given shock "therapy," and treated to a host of other major and minor assaults. Against my will, I was forced to take drugs that caused many unpleasant side-effects including parkinsonism, photo-sensitivity and excessive thirst."

I am comparing the experiences of those with mental illness and who are forced medications, to show that we need to be cautious with the idea of a cure for autism. Why would those with autism be treated differently and be given a choice of whether to be treated? The fact that society is deciding that a cure is needed at all, is stating that a cure should be given.

I have asperger's, which is a form of autism, it does affect my everyday life, but I am against the notion of a cure. I dont want to change my whole personality, thought processes, ideas, interests, and culture, just because I am different from the norm. I do believe that people should be helped with areas in which they want help, such as speech therapy, but that is radically different from attempting to chemically alter ones brain, and different from wiping autism out of the gene pool.
When people say to me "Ok, you dont want a cure, but let other people have the chance, what difference does it make to you". It will make a difference to ALL of us. Nothing happens in isolation. Why wont people with autism be pressurized to take a cure?

People need to be aware of the reality of having a cure, millions of dollars are being spent to achieve it, it is not in the realms of fantasy anymore. And the consequences will be very real too.

Saturday, January 15, 2005

Autism Assembly - the New Coaltion of Autism Groups and Websites

The new initiative for working towards better rights and care for people with autism is the Autism Assembly.

The Autism Assembly is a way for all those involved in working for autism rights in education, therapies, treatments and the issue of a cure, can join together and show unity on the important issues.

The common goals are acceptance for autism, educating people about the reality of living with autism, and not seeking a cure for autism.

All members and groups will carry a banner on their site to show that they are a member, and the statement of unity which is "This website is part of the autism assembly, this is a coalition of members of the autistic community who share the common goal of seeking acceptance for those on the autistic spectrum, who aim to educate about autism, and who are not seeking a cure for autism. This is part of the global autism rights movement."

The issue of finding a cure for autism is one of the controversies within the autistic community. Most parents of autistic children support the finding of a cure and support groups such as can - Cure Autism Now and NAAR. However most of the adults with autism who are involved with groups on the internet, seem opposed to the idea of a cure, feeling that autism is a neurological difference that should be accepted and appreciated.

The autism rights movement should ultimately benefit and gain strength from having this coalition, it is a positive move forward for all involved.

If you are interested in the Autism Assembly please view the site at

Thursday, November 18, 2004

Declaration From the Autism Community That They Are a Minority Group

Members of the autism community have released a statement in hopes of being declared a minority group by the United Nations.

A statement has officially been released from members of the autism community that could mean a big difference to their futures.

If successful, and the United nations declare that the autism community is a minority group, it could help to end discrimination for those who have this neurological difference.

The statement reads thus-

This is a declaration from the worldwide autism community that from here on we wish to be recognised as a minority group.

We make this declaration to assert our existence, to be able to have a "voice" on autism, rather than only that of experts and professionals in the field, to show how discrimination affects our lives, and that we want to direct a change from this type of bias against our natural differences, and the poor treatment that can ensue thereof.

We recognise the autism community as those diagnosed with any condition on the autism spectrum, including autism, low-functioning and high-functioning, those with asperger's syndrome, fragile x, hyperlexia and PDD-NOS. We are aware that there are some people who have not yet recieved diagnosis, yet still recognise themselves as on the autism spectrum, and have the same elelments on the diagnostic criteria.

We recognise ourselves as a minority group based on the following factors-
People in the autism community have their own way of using language and communication that is different from the general population, is often misunderstood and can cause a bias against us.
Autism spectrum conditions are scientifically proven to be largely genetic and heritable. Many of those on the autism spectrum who have children bear children who are also on the spectrum, this needs to be recognised to avoid the frequency of criticism of autistic parents and discrimination that is suffered as to misunderstanding of the different needs, and communication between family members on the spectrum.

People on the autism spectrum have a unique social network, this is primarily using communication with text on the internet. It is an invaluable community for many of us. There should be increased availability and recognition for this autism community online so that isolated members of the autism community can join and participate.

People on the autism spectrum have our own cultural differences, unique habits, such as stimming and different perspectives than the norm. We feel it is essential that this is recognised as these "traits" are the things that some children and adults are forced to stop by some harsh and intensive therapies. We should have the right to be ourselves, without the pressure to conform and change our cultural differences.

We experience discrimination in various forms, often because of our different use of language and communication, habitual differences such as stimming, and lack of acknowledgemnt that autistic parents may have autistic children, and differences in the children are not due to poor parenting, but the innate differneces of our minority group.

The members of the autism community are facing an imminent threat of possible cure, in whatever fashion that may transpire, pre natal testing for autism that could mean a form of eugenics, and total prevention from genetic counselling before conception. We have grave concerns of the possibilty of being forced to accept a cure, of parents being forced to cure children, and of there being great pressure put on parents on the spectrum to have genetic tests, or pre natal screening. In the same sense that this would be entirely unacceptable to cure someones skin colour, we feel that our differences need to be respected and our minority group to be protected.

A specific case of how being afforded protection would help members of the community is the present treatment meted out to autistic children at the Judge Rotenberg Center in Boston in the USA. The children can be given electric shock "therapy", this is from a contraption that can be worn for many years. This inhumane treatment is sickening to members of our community, this is just one such example of many.

We mean for this statement to begin a process of official recognition by the United Nations that we are indeed a minority group, and worthy of protection from discrimination, inhumane treatment, and that our differences are valid in their own right and not something that needs to be cured.

Monday, November 01, 2004

<>Teen with Asperger's Syndrome Creates Own Website for Everyone on the Autistic Spectrum

"Spectrum Haven" aims to be inclusive of everyone on the spectrum, including kids and teens who want to make friends and have fun. The site is for those with autism, asperger's syndrome, Fragile X, hyperlexia, ADD, ADHD, PDD-NOS and dyspraxia.

Gareth Nelson who is 17 and has Asperger's Syndrome had the idea to create a website for anyone who considers themselves as part of the autistic spectrum. He says "The idea is to be inclusive, get to know others who are the same, discuss issues, and have fun, I want to include everyone, those with autism, aspergers, Fragile X, PDD-NOS, ADD, ADHD, hyperlexia and dyspraxia".

The autistic spectrum is a continuum that encompasses various conditions, and socialization can be a difficult area for many. Autism is known by a "triad of impairments" involving social skills, communication and behaviour. An online meeting place can be invaluable as a way to meet others with similar ideas.

Spectrum Haven will have areas for serious discussion, but importantly, emphasis is put on fun, friendship, and enjoyment. There is also a chat room specifically those on the autistic spectrum, and one for kids under 13.

Gareth says "Being inclusive with age groups is important too, when I was younger there was nowhere to meet others like myself, I wanted to change that". The name was inspired by the feeling that a website should be a safe and comfortable place to express feelings and ideas. Parents are also invited to join and share their views or advice.
The website is anyone with an interest in any of the conditions is free to join.