Promoting Internet Safety for Individuals with Asperger’s Syndrome and Autism

 

Social networking can and should be a lot of fun for our teenagers and young adults. However, there are stalkers and predators who can be quite crafty at getting personal information and putting our children and families at risk.

 

The following is from one of ASNC’s invaluable resources:  John Thomas.  John has worked with individuals with autism over the last 36 years as a teacher, a TEACCH therapist, a behavior specialist, a supported employment coordinator, a vocational coordinator at Carolina Living and Learning Center and as the autism specialist at NC’s Department of Public Instruction.  Presently he is a training consultant with ASNC and supports the development of autism training teams in multiple school systems, coordinates training of school teams in early intervention practices, and supports training of ASNC direct care staff:

Social networking can and should be a lot of fun for our teenagers and young adults.  However, there are stalkers and predators who can be quite crafty at getting personal information and putting our children and families at risk.

Simply, any set of ‘internet safety’ rules need to be developed specifically for the person who will use them.  As frequently is the case, I cannot set up a rule for a person with ASD unless it is a rule that the person and I have come to agree on.  In other words, rules work best when they are negotiated and when they are rules that the person with ASD sees ‘as his own.’  Sitting down and making a set of rules that fit the individual is a key.

Because of this, we cannot give you a set of internet safety rules that are right for your family member.  The rules have to be individualized.  I think back to a situation many years ago in which I worked with a 21-year old woman and her grandmother who lived together.  This young woman spent a great deal of time on the internet (maybe 10 or more hours per day).  At one point, the grandmother came to me quite upset that her granddaughter had made friends with an individual who was a convicted felon from another state.  The granddaughter had given their street address to this person and, of course, the grandmother was very alarmed.  The granddaughter kept saying to me, “I’m 21 and I can do what I want.”  In this case, no social story or cartoon conversation or contract worked. I had to develop a chart that showed her very concretely what sharing personal information meant to her life style (would she continue to live with grandmother?).  The graphic or chart looked like this:

Only when this young lady could see what ‘following the internet rules’ meant for her could she then agree to follow them.

With this in mind, the goal here is to share with you some websites and resources that can help you in creating a system of privacy and safety that will keep your family member from abuse, shame or financial and personal harm. As you will see, some of the sites have great information but it is way too much.

First, think about how many rules are right for your family member. Do I set these up with him or her in a sequence of exactly what to do. For instance, do the rules look like this:

1)      Keep your personal information to yourself. Do not share address, parents’ names, social security number, driver’s license or any information about your bank or credit cards.

2)      Keep your anti-spyware and anti-virus programs running at all times. (If you get a virus or spyware message, get offline and fix it immediately (call ____).

3)      Use only a browser that will not leak information. Specify which browsers here:_____

4)      Use the ‘s’ when logging on to websites and engaging in banking transactions. Type in an ‘s’ after the website or URL. This makes it more secure: https://www.secu.org

Secondly, I strongly encourage you to look at the rules posted by Facebook for safety. This is a very thorough list and therefore may need to be broken into just a few rules that fit your family member. But it is really worth reading!

http://www.facebook.com/terms.php

Finally, look at some of the other descriptions that are provided below. I especially like the one from Common Sense Media that sets up three rules:

1)      Stick with your friends.

2)      Keep private information private

3)      Don’t let your information get away from you.

You should know that these rules are very conceptual and vague. As a result, they do not fit with the thinking of many people with autism and require judgments that will be difficult. YOU need to make them clearer and more concrete. What I like is that there are three of them and that they are simple. You will have to help make them belong to your family member. One adjustment would look like this card that you could put beside the computer:

http://www.pcworld.com/article/169120/facebook_etiquette_10_rules_for_better_socializing.html

http://www.commonsensemedia.org/3-rules-facebook-privacy

http://www.socialmediatoday.com/SMC/16496

http://www.pilgrimworks.com/Facebook.htm

The Pilgrim Works site above is a set of facebook rules for teens. This may be a very helpful resource for you to adapt.

Good luck developing your system!

Please note that a special note of thanks goes to Deb Zuver of the Carolina Institute for Developmental Disabilities at UNC-CH and to Rebecca Grau from the Kentucky Autism Training Center for their help in finding resources for you with additional input from Becky Edmondson of CIDD and Ellen Russell at The ARC.

One Small Step For Awareness, One Giant Leap for Coverage

Mr. John Burress From Winston-Salem Provides Testimony to NC Senate Health Committee

Today I witnessed in awe a community of diverse people from across our state come together in unity, with standing room only.  Although clapping is not typically the protocol for legislative meetings, the North Carolina Senate Health Committee Hearing on SB 1265, Treatment of Autism Spectrum Disorders, was subjected to enthusiastic applause after every honest and highly personal testimony by a grandfather, three mothers, and two fathers.  Our sponsor of the bill, Senator William Purcell, even joined in after a while!

After the hearing, Tre Benson, the devoted father from Lee County, echoed this same sentiment:

I thought those of us parents asked to speak would be able to keep it together, just the facts, cold cut and dry but when any of the speakers mentioned their child, personalized their point, we all instantly had those “walk a mile in my shoes” magically slipped onto our feet, we felt the heartache and love fill the room with tears. I saw doctors in their white coats with faces wet from the water streaming down their faces. It was a blessing to have seen strangers connect in such a way.

The Autism Society of North Carolina has been tirelessly working at the Legislature for this bill, coordinating with the autism community throughout the state, in addition to graciously hosting a lunch for all who attended afterward at their Raleigh office.  Autism Speaks also deserves kudos for drawing families to the hearing and especially for Lorri Unumb, Senior Policy Advisor and Counsel, who gave a pretty good impromptu class in what I’d call “Autism 101″ in response to legislators’ questions about the differences between Pervasive Developmental Disorder-Not Otherwise Specified, Autistic Disorder, Autism, Asperger Syndrome, and Autism Spectrum Disorders.

We are far from claiming a victory for autism health insurance reform.  The Senate Health Committee did not vote today, as they are waiting for the fiscal note to be drawn up.  Stay tuned to ASNC and Autism Speaks e-alerts.  But from this day forward, know that when we work together, our loved ones benefit greatly.  I was honored to witness it with my own tear-filled eyes.

We Are A Coalition

ADVOCACY DAY & POPCORN RALLY JUNE 1, 2010 8 AM TO 2 PM!

Do you ever wonder how things get done for our loved ones?  The Autism Society of North Carolina is a member of The Coalition, containing approximately 40 members from the Mental Health, Developmental Disabilities, and Substance Abuse Service communities throughout the state.  Last year I attended the Advocacy Day & Popcorn Rally and spoke to my legislators about better funding for services and supports for people with developmental disabilities, including autism.  On June 1, 2010, the Autism Society of North Carolina will be at the Registration Table again to welcome us.

Here are the details.  It is vital to see you there, having your say!

Advocacy Day & Popcorn Rally

Sponsored by The Coalition

TUESDAY, JUNE 1, 2010 (day after Memorial Day)

ADVOCATE FOR BETTER FUNDING FOR MENTAL HEALTH, DEVELOPMENTAL DISABILITIES & ADDICTIVE DISEASE SERVICES AND SUPPORTS

at the…

LEGISLATIVE BUILDING,

16 West Jones Street, Raleigh, 27601

Registration will open at 8 am on the back portico of the Legislative Building. Participants will receive information on the day’s legislative committee meetings, the current budget proposal and begin to visit with legislators.

Advocacy trainings will take place in the Legislative Building Auditorium (third floor) beginning at 9 am. The short trainings will be on ways to effectively communicate your message to legislators.  Volunteer will also be on hand in the auditorium with tips & techniques for making the most of your legislative visit.

Popcorn will be available on the portico beginning  at 11 am. Please note that lunch will not be provided.

PARKING:  Passengers in vehicles of any kind must be dropped off at the LEGISLATIVE BUILDING. The driver will then be able to park the car or van at the state fairgrounds (GATE 9) and get bussed to the Legislature.  Shuttles will run from 8 am until 2 pm.

For more information, visit The Coalition or contact Elizabeth Cloud at ncpaelizabeth@mindspring.com or Erin McLaughlin at emclaughlin@mha-nc.org.

My Lunch with Temple

Dr. Temple Grandin and momof3au

We faced each other across the linen-laid table; her police-siren blue eyes locked with mine.  We were smirking and guffawing together over the propensity of the English language for visual thinkers.

“Temple, I’ve been thinking about working memory and autism.  You see…”

“Oh, I have a horrible time with working memory!”, she retorted.  And off she went, telling me about the redesign of a packing plant and how it took her 12 visits to get the sequence of steps down in her mind properly before she could work on the project.

Okay, maybe it wasn’t just me and Temple Grandin dining, but Susanne Harris, Temple, a few talented service providers and agencies, a handful of awesome Duke research scientists…and me.

How did it happen that I should be one of the fortunate few?  If the Rock Star of the Autism World happens to be honored at Duke University, which happens to be in Durham, North Carolina, and you just happen to have three children with autism living in Durham, you may just happen to stick out like a sore thumb and luckily happen to be included.  And what a happening it was.

Highly acknowledged for her accomplishments in the fields of animal behavior, humane livestock facilities design and autism, Temple Grandin is, well…Temple Grandin IS.   Aside from being simply brilliant, she’s a very funny woman.  I think I may have slightly colored her well-attended public presentation by her drilling me with questions about my boys’ accomplishments, current interests, and the challenges I now face in raising three teenagers on the autism spectrum.  Negative examples of too-narrow interests such as heavy metal and sex peppered Temple’s speech as she wove her thoughts on how to encourage skills in people with autism for the work force along with her perspectives on engineering, animal behavior, and brain function.  Somehow, in a style unlike anyone I have ever met, she made it all work beautifully.

Temple Grandin, one of Time’s 100 Most Influential People, has also been closely following media reports on the oil spill in the Gulf of Mexico, her latest deep and focused interest.   She punctuated her comments at the end by saying if she was in Congress, she wouldn’t want to hear from the president of BP, she’d want to talk to the engineers!  I say Temple Grandin for Congress.

Did you see HBO’s Temple Grandin?  If you haven’t or even if you have, the DVD will finally be available on August 17th, 2010.  You can pre-order it now through ASNC by calling 1-800-442-2762, dial Extension 1130. She thought they did a fabulous job (I did too).  I also hear Temple is again invited to Durham by Duke next year, but this time by Women’s Studies.  They’ve reserved a big hall.  I know it will be filled.

Our host for my lunch with Temple was the Duke Institute for Brain Sciences (DIBS).  And Dr. Fitzpatrick?  I hope you’re reading this.  This is my formal note of thanks.  THANK YOU!  Thank you for giving me a life-changing experience, but now I’ve got to get to work on Temple’s advice for my boys.  Like Temple’s mom, I’m going to make it happen.

Monday, May 10, 2010: THE PLAN

Legislative Office Building, North Carolina General Assembly, Raleigh

Come to the last meeting of the North Carolina General Assembly Joint Study Commission on Autism Spectrum Disorders on Monday, May 10, 2010 at 1:00 p.m. in Room 643 of the Legislative Office Building in Raleigh!

The Autism Society of North Carolina, in partnership with Autism Speaks, has been diligently working at the Legislature to get an autism insurance bill for our loved ones introduced in the upcoming legislative session.

You will make an important impact by your presence at this meeting to hear recommendations by committee members.  A strong attendance by the autism community will encourage the committee members to recommend introduction of the bill into the upcoming legislative session.

Here are driving directions with parking suggestions.  Allow yourself ample time to park and walk to the Legislative Office Building, affectionately termed “L-O-B”.  This building is not to be confused with the Legislative Building (“LB”) on Jones Street, which faces the dinosaurs in the North Carolina Museum of Natural Sciences…

Legislative Building, North Carolina General Assembly, Raleigh

If you’ve never attended a meeting or hearing at the General Assembly, there is a pedestrian bridge (which you can see a bit of in the first picture) connecting the Legislative Building to the 3rd Floor lobby of the Legislative Office Building.  The Legislative Office Building’s 3rd Floor lobby is where the Autism Society of North Carolina will have a sign-in table at 11:30 a.m. to meet you, answer questions, and assist you in attending the 1:00 meeting.  Please note there are strict rules governing lobbying at the General Assembly, so do not bring signs into the building with you.

If you plan to attend, please click here to check the NC Legislative calendar to confirm the meeting room, as last-minute room changes sometimes occur.  If you are unable to come, you can listen to the meeting by clicking here and then click on Room 643.

This last meeting of the Study Commission will be the first in many ups and downs of the legislative process.  ASNC asks that you halt writing committee members for now, but if you haven’t told us your story, contact us at autisminsurance@autismsociety-nc.org.  Send your name, address including county, and best phone number and email address to reach you if your child has been denied treatment coverage through your insurance company, or if you are a small business owner and support autism insurance coverage.

I do hope you may be able to come and witness history being made.  I look forward to seeing you!

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