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mycats
Raven
Raven


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Age: 47
Posts: 101
Location: Allentown, Pennysylvania

PostPosted: Fri Feb 24, 2012 10:44 am    Post subject: A complaint about an Aspergers Syndrome suport group meeting Reply with quote

I discovered Asperger's Syndrome in 1999. I have always had this criteria my entire life. Increasing awareness of Asperger's Syndrome lead to me finding out about it, and in 1999 I found my answer to what has always been different about me and why I don't fit in anywhere.

And now in 2012 it has now passed the point of 12 complete years since discovering this about myself. And still after all of this time, there is still a void of any Autism support group for Autistic adults to be found anywhere in the Lehigh Valley. Asperger's Syndrome is in the spectrum of Autism, and I use the word Autism to refer to all people who fall into the spectrum.

Back in 1999 I thought life would get easier for me now that I know what I am. It is such a relief to discover the existence of a real state of being that can lead me to find other people out there who are like me.

I found an Autism support group. I wanted to talk about the bullying I have faced my entire life. I wanted to talk about a sophisticated psychological bullying I now face as an adult from other adults. But this support group is run by parents who have claimed the meeting for themselves.

And then an Asperger's Syndrome support group meeting formed. A specific support group meeting that is all about Asperger's Syndrome which defines the exact degree of Autism that I have. Surely I would now be able to find the support I need and find a community of people who are like me that I can relate to.

No such luck. This Asperger's Syndrome support group meeting is run by and dominated by parents of young children. Not being able to find exactly what I am looking for, it would make sense that I would have to attend the meetings to see if any other adults with Asperger's Syndrome would show up to the meeting that are looking for the same support that I am.

The Arch of the Lehigh Valley is a center for Autism. ARCH stands for Autism Resource Community Hub. All they do is to help people with Autism. It is the only such resource like this to be found anywhere in the Lehigh Valley. They provide Autism services for children only. They ignore Autistic adults. They provide no services for Autistic Adults. There is no support group for Autistic adults. They are doing absolutely nothing to establish any kind of services and support and advocacy for Autistic adults. In the planning stages it was promised that the Arch would be a place that would help all Autistic people. There is no other place in the Lehigh Valley that provides services exclusively to Autistic people. There is only the arch. And the Arch does nothing to include services for Autistic adults.

I found an exact quote that claims that the Arch is supposed to help ALL Autistic people. "The Mission of the ARCH of Lehigh Valley is to provide a safe, therapeutic and educational environment for people with autism regardless of age or ability"
http://www.elwyn.org/program/autism_resource_community_hub_of_lehigh_valley

The Arch is not helping Autistic adults. The Arch is the ONLY Autism Center in the Lehigh Valley. The Arch is a rarity even in the entire country. I have to file a formal complaint against The ARCH because they are ignoring Autistic adults.

Any existing Autism support groups are dominated by the perpetual presence of parents of young children. When those children become adults, the parents become silent and go away. Autistic adults are left to fend for themselves and face a lifetime of bullying alone.

I found a support group meeting that calls itself an Asperger's Syndrome support group, and yet the meeting is void of the presence of people with Asperger's Syndrome.

I want to go to the meeting and defend my right to attend the meeting. I want to address the bullying that happens to Autistics of all ages. I want to address the bullying that I face as an adult. I want to address the desperate need for an Autism support group that is actually supportive for actual Autistic people.

It is impossible for me to go there stand up to these people and defend my rights. There is a complete lack of presence of the fathers. Where are the fathers? These mothers are bullying their Autistic children. I can't stand up to them because when I do those mothers totally play the gender card and claim they are being intimidated by the male. The fathers can't even stand up to the mothers. My father may not have been emotionally there for me but now I know it is because he was just as much a victim of my mother that I am.

This planet is a very dangerous place for Autistic people. Parents try to establish services for their children only while they are young children. Parents only talk about Autism awareness to define Autism as a disorder. This one sided approach to awareness contributes to and creates more bullying. Once the child reaches the stage of being an adult, the presence of parents of adult children disappears from these support group meetings. Autistic adults need so much support to be able to survive in this world. Parents should not be allowed to run their own support group meetings when there are Autistic adults that exist who are suffering because they don't have such a support group for themselves. When parents ignore the adult version of the child, this has to be seen as negligence.

There has to be laws made that will require parents to protect their Autistic children beyond the age of 18. Once a child reaches the age of 18 there is no requirement for a parent to defend their Adult Autistic child from discrimination from college and all the discrimination they face as an adult. There is no requirement that a parent has to protect their child from the kind of bullying that an Autistic adult faces in this world.

Over the course of 12 years I have observed the behavior of the parents of Autistic children, and it is absolutely atrocious. If an Autistic child is discriminated and bullied, it is up to the parents to protect that child. The parents are not voluntarily doing this. There has to be laws to forcibly require parents to protect their Autistic adult children. By the word protect I do not mean control. Address the bullying that happens in this world and level the playing field so that Autistic people can exist and survive in this world independently on their own.

The first step is that there cannot be any hint of abuse at these support group meetings. When Autistic people are not included at Autism support group meetings we are having a very serious problem with psychotic parents that has to be dealt with. When there is no existence of an Autism support group meeting for Autistic people to be found anywhere, then they have to be allowed to attend whatever meeting that does exist. Not just to attend, but absolute equality to speak and be heard at this meeting.

I have to make an inquiry to St. Luke's Hospital about the records of all suicides whether they were successful or attempted. How many of them were Autistic? This isolation of being so different, and the lifelong bullying for being so different, and not being able to find any support and a community of other Autistics is a very depressing and hopeless situation that is leaving suicide as the only existing logical choice to make.

If you let that support group continue to practice the same old way that it is been, this will lead to suicides when their children grow up and become adults and find that adult mental health services is insufficient in recognizing the bullying that happens to Autistic people. There is absolutely no adult Autism support group in the Lehigh Valley. The adult mental health services has done absolutely nothing to help me establish one.
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noname_ever
Phoenix
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Joined: Dec 26, 2011
Posts: 500
Location: Indiana

PostPosted: Fri Feb 24, 2012 11:03 am    Post subject: Reply with quote

You could look into grasp.org

I don't know if there are any meeting sites close or within driving distance to you.
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hartzofspace
Red Dragon
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Joined: Apr 15, 2005
Posts: 7684
Location: On the Road Less Traveled

PostPosted: Fri Feb 24, 2012 11:11 am    Post subject: Reply with quote

I used to live in Allentown!

Anyway, I understand your frustration. It amazes me how short sighted the parents of children are the spectrum are. Do they think that their children will never grow up/ Maybe they will be spirited away by Peter Pan? You can't possibly be the only adult with Asperger's in the Lehigh valley! I hate that place; that's why I left. I got so sick of the provincialism, close mindedness and stuck-in-a-rut syndrome that I encountered there.
You might have to go to another county to get the help you need. There is a group called ASPEN, but they are in NJ. They are mostly about adults with Asperger's. Maybe you could drive (do you drive?) to one of the locations. Here is a link:
http://www.aspennj.org/index.asp
If that is not feasible, maybe you could contact someone there about your situation in PA. Hope that helps!
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TechnoDog
Phoenix
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Joined: Feb 17, 2012
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Location: Thornaby, UK

PostPosted: Fri Feb 24, 2012 11:14 am    Post subject: Reply with quote

Ye think we do need to do more about creating our own group. All you really need is a park or car park. I'll bring monopoly. Smile

Think people here are isolated in there own houses though. Or maybe I should look on this site to see if anyone is near me lol
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ChrisP
Toucan
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PostPosted: Fri Feb 24, 2012 11:20 am    Post subject: Reply with quote

I'm not sure that 'filing formal complaints' will get the OP anywhere, but I can understand the sheer frustration of groups not being what they claim to be.

My own experience of a group was a positive one, and this was down to the quality and clarity of the leadership. It was able to function as a support for both parents of Aspie children and for Aspie adults like myself simply because meetings split for discussion into two groups so that the parents could get the support they needed, but the adult Aspies could also discuss their own needs and ideas with a support worker present. Parents of Aspie children spend a lot of time fighting 'the system' to get a hearing for their children and their needs: unfortunately, some parents get so caught up in the battles that they act as if the whole of life is a war.Sometimes when they are shooting (or shouting??) at everybody, we end up with them shooting (or shouting!!) at us as well. We are actually on their side, but we are entitled to support as well!

Here's to more (and better led) support groups everywhere!
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JeremyNJ1984
Velociraptor
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Age: 30
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Location: Central New Jersey

PostPosted: Fri Feb 24, 2012 11:20 am    Post subject: Reply with quote

Set up your own group using meetup.com....its pretty simple..explain what the group is about, who runs it, and what its intentions are. That way you can gauge the way people react. I think where you live is a big problem as to why their are no real appropiate services.
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MjrMajorMajor
Phoenix
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Joined: Jan 16, 2012
Posts: 6909

PostPosted: Fri Feb 24, 2012 11:44 am    Post subject: Reply with quote

It's probably a common problem everywhere. Even on online forums, you can be overrun by the parents trying to "cure" their kids of their autism.
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ooOoOoOAnaOoOoOoo
emotionally disturbed rationalist
Phoenix


Joined: Jun 19, 2008
Posts: 10266
Location: Murgatroyd

PostPosted: Fri Feb 24, 2012 11:46 am    Post subject: Reply with quote

How frustrating! Good luck in finding your peeps! You could start your own group for adults with AS. Advertise online or in newspapers. Leave signs on bulletin boards. You might have to put your phone number in your adss but I am sure plenty of iinterested people will call and you all can collectively decide where the best place to meet is.
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MinorAnnoyance
Snowy Owl
Snowy Owl


Joined: Oct 05, 2006
Age: 32
Posts: 133
Location: Hamilton, Ontario

PostPosted: Fri Feb 24, 2012 1:01 pm    Post subject: Reply with quote

I have noticed a lot of talk women have about autism is about them as a parent having an autistic child, not about people with autism. It seems like it's assumed you're either completely incapable and have to have someone else talk for you entirely or you're completely capable and have no need of any consideration, so either way your left out of the conversation.
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questor
Hermit
Phoenix


Joined: Apr 24, 2011
Posts: 2101
Location: Twilight Zone

PostPosted: Fri Feb 24, 2012 1:06 pm    Post subject: Adult Autism/Asperger's groups Reply with quote

Don't waste your time or your and the Arch's resources in a law suit. There is a more constructive solution.

I agree with JeremyNJ1984 and ooOoOoOAnaOoOoOoo. Start an ADULT Autism/Asperger's group. Make it clear from the start that this group will be only for adults on the spectrum, and is not going to be a group for parents of spectrum kids. Make it a requirement that persons attending be on the spectrum, or at least believe that they may belong on the spectrum, and they must be at least 18 years old. No NT parents allowed!

If you can't get the Arch to help with providing a location, you can look into the parks idea, but that wouldn't work in bad weather. Try contacting the libraries, community centers, and schools in the area, to see if they will let you use one of their meeting rooms on a regular basis, either for free or for a nominal fee. If you tell them what it is for they are more likely to be reasonable about keeping the fee low or zero. If it is still beyond your new group's means, you could apply for a grant, or raise money with a bake sale or other such thing. Have fun with it!

Use the I-net and places like MeetUp.com to set things up.

Sorry, you can only count on me as an online member. I no longer live in that area. Also, because of health problems, and my being a hermit type, I don't go out much. I do enjoy the benefits of the I-net, though, and am glad I found WP. This place has a number of different forums. I believe that there is even one for adults only.
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TechnoDog
Phoenix
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Joined: Feb 17, 2012
Posts: 869
Location: Thornaby, UK

PostPosted: Fri Feb 24, 2012 1:10 pm    Post subject: Reply with quote

You guy's actually used meetup.com to set up a group?

Or did you not read the help, with the costs.
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ooOoOoOAnaOoOoOoo
emotionally disturbed rationalist
Phoenix


Joined: Jun 19, 2008
Posts: 10266
Location: Murgatroyd

PostPosted: Fri Feb 24, 2012 1:27 pm    Post subject: Reply with quote

Stay positive in your ad by stating it's a group for Asperger's adults. Do not mention NTs. Then when people call tell them that you want the focus of the meetings to be adults with Asperger's. You can keep a number handy if they need referals for a parent/child group and tell them to call that number.
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Radiofixr
Punished daily for being me and different
Phoenix


Joined: May 31, 2010
Posts: 1499
Location: PA

PostPosted: Fri Feb 24, 2012 2:54 pm    Post subject: Reply with quote

I belong to two groups in SouthEast Pa one is New Horizons which is an adult social group Aspergers/Autism group-we do outings and have monthly discussion meetings about things in our world and the facillitator is great-no parents(some of the members live at home and do not drive) do not stay so it is for autistic adults or adults on the spectrum I am a member and another one I am a member of is further away but I have been going to this group since it started and it is for 18 and older and the lady that runs it is wonderful but it is in Manasquan,NJ and it just goes to show how far adults have to go to find a support talk group-and child on the autism spectrum grows up to be an adult on the autism spectrum.
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mycats
Raven
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Joined: Nov 14, 2005
Age: 47
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Location: Allentown, Pennysylvania

PostPosted: Sun Feb 26, 2012 12:13 am    Post subject: Reply with quote

I got a phone call from (610) 782-3000 on a Saturday Evening.

I called it back and it went into a menu that said it was County of Lehigh. Why would county of Lehigh call me on a Saturday evening?

I live in a very weird area where I am bullied for being Autistic. I assume based on the way I am treated that the same thing is happening to other Autistics in the area. I am trying to get a support group together because it will be impossible to win this battle if we stay isolated from each other. I have been trying to network local Autisitics to be able to say as a group stop f*****g with us.

The harder I try to start a support group the more I am afraid of what the hostile natives are going to do to me. The Lehigh Valley is a very strange area. I am trapped in the twilight zone.

I am trying to report my complaint above to the authorities such as the FBI.
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auntblabby
Chief Assistant to the Assistant Chief
Phoenix


Joined: Feb 13, 2010
Posts: 28373
Location: the island of defective toy santas

PostPosted: Sun Feb 26, 2012 4:21 am    Post subject: Reply with quote

TechnoDog wrote:
You guy's actually used meetup.com to set up a group?Or did you not read the help, with the costs.

that is how my aspie meetup group started, before it melded into square pegs seattle, as an olympia offshoot. i am so glad my group is just for adults.
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