'If not us, who?': Catholic couple recognized for autism advocacy [CNS]

[Palm_Tree]

‘If not us, who?’: Catholic couple recognized for autism advocacy
catholicnews.com/data/stories/cns/0902739.htm

Servitor Pacis award to honor husband and wife’s autism work
catholicnewsagency.com/new.php?n=16261


Bob and Suzanne Wright, co-founders of Autism Speaks. Autism Speaks is the United States’ largest autism science and advocacy organization. The Wrights launched the foundation in February 2005 after being inspired by the challenges facing their grandson, who is autistic. The organization aims to help find a cure for autism by raising funds for research, raising public awareness of autism, and giving hope to those who suffer from autism.

autismspeaks.org/
http://www.autismspeaks.org/images/d_200801_logo.gif

 

[bacon_man]

I have aspergers syndrome, I’m not a fan of this organization. I have autism, I can speak for myself. Noone in their board has autism. So I dont know how they can claim to speak for people with autism if none of them have it themselves.

 

[the_phoenix]

Another side, perhaps less heard from:

wrongplanet.net/article371.html

Not everyone who has autism is a fan of “Autism Speaks.”

 

[bacon_man]

Exactly, I’m also a member, of WP (not under this screen name), but I don’t go there much anymore because there are alot of athiests there who like to argue with you if you express a chrisitian view point. And there seem to be some weird people into freaky things like neo-paganism, that sorta creeps me out, even if it is on the web, thats really what bothers me the most. Just a small number, but still, there are alot of people who like to pick fights with Christians, but you never see muslums or buddists or Jews being treated that way. I just don’t like dealing with it. I still post on there ocassionally but nearly as much as I used to, and I dont even go into the religion forum.

 

[JReducation]

I have aspergers syndrome, I’m not a fan of this organization. I have autism, I can speak for myself. Noone in their board has autism. So I dont know how they can claim to speak for people with autism if none of them have it themselves.

I’m going to disagree here. I don’t have autism. But my community has allowed me to advocate for people with autism since 1972. I have also taught seminarians and religious who are in formation to advocate for the person with autism, especially in pastorla matters.

We have even developed groups for persons on the spectrum and their families and we provide a weekly spiritual formation class that integrates the entire family and helps families where there is autism come together in prayer and worship. We have found that couples who are parents of children with autism benefit a great deal from this type of pastoral care, because having a child with special needs can often lead couples to become distant from each other and to become so focussed on their child that they forget their marriage.

Sometimes you have couples where the mother is the advocate of the child on the spectrum and the father is very distant from the day to day struggles that these mothers must face. Eventually this breads resentment and distance between the couple. Our ministry helps these couples face the challenges together.

We also find that we can help siblings who feel ignored because of the attention that a brother or sister with special needs may get from the family. We help them become involved with the family in a way where they can see autism, not as a disability, but as an opprotunity to find Christ in the family as it is, rather than wishing that it were different.

Finally, we have helped many young people on the spectrum who are preparing for the sacraments and are having a difficult time, because the religious educator is not familiar with the learning style of the student with autism. Often the student is unable to communicate how he or she learns best. We adovocate for these students by helping religious educators learn how to teach the faith to people on the spectrum in a way that in compatible with their learning style.

There is nothing wrong with any organization raising funds to do research that will help children in the future. Autism Speaks is about helping find a solution to autism for future generations and securing the rights of people who live with autism.

You do not have to be on the spectrum to work alongside or for those who are. It’s like those who work for the blind or the immigrant. One does not have to belong to that population to show concern and speak for them and their well being.

You may be taking the statement “speaking for persons with autism” too literally. It does not mean that they are attempting to take away the voice of people wiht autism. It means that they are taking a stand on behalf of people with autism. In reality they are partners with those who live with autism.

Just a few thoughts to think about . . .

Fraternally,

Br. JR, OSF

 

[Hlafdige]

JR, you are right in saying that autistic people and their families need all the advocacy and support they can get. And no doubt the Wrights do a great deal of good. But as an autism advocate yourself, you are no doubt familiar with the controversy surrounding the idea of seeking a cure.

Autism lies deeper at the foundation of a person‘s identity than gender or any other characteristic except species; the fact of being autistic as pervasively defines a person‘s destiny as the fact of being human. It is a congenital neurological condition, 90% hereditary, 10% probably influenced by factors like hormones in the womb or head injury during birth. The brain develops too quickly before birth and/or in infancy, and the grab-bag of issues that can result – physical, social, sensory, intellectual challenges, savant skills, the whole range of symptoms from mild to severe – is called autism or the autistic spectrum. What you get when nature holds your baby hand into that grab-bag is at the foundation of what you are. It‘s not something to be cured, any more than mortality or having lungs instead of gills is curable.

So-called cure methods offered range from ineffectual medical treatments (e.g. blood chelation) to high-stress behaviour modification comparable to brainwashing, where children are trained by electric shocks and the like in eight-hour-a-day sessions to emulate „normal“ functioning which they don‘t understand and aren‘t neurologically equipped for. Autistic children already have it as rough as it comes. They don‘t need that in addition.
And they can speak for themselves, as did James Sinclair in his well-known 1993 essay:

Autism isn’t something a person has, or a “shell” that a person is trapped inside. There’s no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you’d have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,I wish my child did not have autism,
what they’re really saying is,
I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.
Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

 

[JReducation]

JR, you are right in saying that autistic people and their families need all the advocacy and support they can get. And no doubt the Wrights do a great deal of good. But as an autism advocate yourself, you are no doubt familiar with the controversy surrounding the idea of seeking a cure.

Autism lies deeper at the foundation of a person‘s identity than gender or any other characteristic except species; the fact of being autistic as pervasively defines a person‘s destiny as the fact of being human. It is a congenital neurological condition, 90% hereditary, 10% probably influenced by factors like hormones in the womb or head injury during birth. The brain develops too quickly before birth and/or in infancy, and the grab-bag of issues that can result – physical, social, sensory, intellectual challenges, savant skills, the whole range of symptoms from mild to severe – is called autism or the autistic spectrum. What you get when nature holds your baby hand into that grab-bag is at the foundation of what you are. It‘s not something to be cured, any more than mortality or having lungs instead of gills is curable.

So-called cure methods offered range from ineffectual medical treatments (e.g. blood chelation) to high-stress behaviour modification comparable to brainwashing, where children are trained by electric shocks and the like in eight-hour-a-day sessions to emulate „normal“ functioning which they don‘t understand and aren‘t neurologically equipped for. Autistic children already have it as rough as it comes. They don‘t need that in addition.
And they can speak for themselves, as did James Sinclair in his well-known 1993 essay:

I’m not promoting cures for autism, because it’s not a disease. I hope I didn’t give that impression. I know that there are many experiments out there and some leave me wondering what the theorists are thinking about.

I do support groups that advocate for a greater understanding of autism and for a possible source. There are two that especially grab my attention. First, the issue with the vaccines given to kids during the 1980s has not been settled. I was swept under the carpte. Everyone knew that the vaccines contained mercury as a preservative and no one said anything until the Canadians and the Italians raised the red flag that the vaccines that they had been purchasing from an American pharmaceutical company has mercury and that they had seen a steady increase in the rate of autism since they began to use those vaccines. When everything was said and done, many American pediatricians said the same. A congressional committee was setup. The FDA, the Dept of Health and the CDC were called in and they all said that they had heard the Canadian and Italian reports, but had decided not to act on them and take the vaccines off the shelf, because the reports had not been studied and proven in the USA.

To me, it sounded like the proverbial red light on the corner. Let’s wait and see if a lot of accidents do happen before we install one.

1. The other study that I find interesting is the genetic one. Like you, I do believe that there is a family trait. We have autism in my family. We have five family members with autism. That number is too high to be a coincidence. If there is a gene that can be manipulated without adverse effects, it would be worth the effort. However, I have strong reservations about genetic manipulation until you have reasonable security in place. I do not advocate genetic manipulation without the proper security. That is immoral and irresponsible.

What I am big on is for pastoral care of families who live with any disability. Disabilities can impair the normal functioning of some families and can weaken their spiritual life for the reasons that I explained in an earlier post.

After my wife died, I joined a religious community whose secondary ministry is Respect Life. One of my greatest concerns is providing a voice for unborn children with disabilities. Many of these children are threatened by abortion, including autistic children.

The argument that people throw out there is that pro-lifers want to stop abortion, but do nothing to help the pregnant mother or the children after they’re born. We have to take that excuse away. This is what my brothers and I do. I have always worked at two ends of this. I do post abortion counseling for dads and I do spiritual direction for families who have kept their children with disabilities, including the autistic. As a result, I have met many needs that families living with autism face. I cdertain want to see people on the spectrum be their own advocates in the Church and in civil society. And as a truly Catholic family, I want to see many of us walk by their side as they advocate for themselves and for their place in Church and society.

As I said before, I was married before I became a Franciscan. I was widowed with a 4-year old son with autism. Today he is an adult, in college and holds down a job. It took a lot of people on his tream to help him get to this point. Being a widowed man with a child who lives with autism is not a walk in the park. But we did it. Today, he is happy in school and work. I’m a religous brother and theological graduate and we have a wonderful present and a past that we are proud to have walked together.

Fraternally,

Br, JR, OSF

 

[bacon_man]

I am so tired of hearing that. Vaccines do NOT cause autism. Thats rediculous. Mercury poisioning is not the cause of autism. Thats ridiculous. Your born that way. I think some poeple just like make people angry at something that doesn’t exist, or are just looking for a scapegoat. Few things irritate me more than that claim.

 

[JReducation]

I am so tired of hearing that. Vaccines do NOT cause autism. Thats rediculous. Mercury poisioning is not the cause of autism. Thats ridiculous. Your born that way. I think some poeple just like make people angry at something that doesn’t exist, or are just looking for a scapegoat. Few things irritate me more than that claim.

No one is going to argue this with you and no one is saying it to make you angry. But there are many people who want to know what happened to this issue.

Fraternally,

Br. JR, OSF

 

[bacon_man]

Oh, well, I didnt read all of it, I just saw that.