PARENTING AUTISM & ASPERGER’S NEWSLETTER
VOLUME
January 2010

Welcome to the first 2010 edition of “The Parenting Autism & Asperger’s Newsletter”.
It’s a new year and a new decade!

Inside this edition you will find:

1. Hot Topic of Discussion – Autism on the Rise

2. In the News – Asperger’s Parents Resist Name Change

3. Prominent People Linked with ASD – American Actor Matthew Laborteaux

4. Various Extras …

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1. Hot Topic of Discussion -  Removing Asperger’s from the Spectrum?

How would it feel if you had worked hard to find the appropriate doctors, therapists, and services for your child, and finally received an accurate diagnosis of Asperger’s Syndrome, only to learn that a group of psychiatrists had decided to remove Asperger’s Syndrome from existence?

Many families are facing this very reality and they are not happy.  The DSM, a diagnostic tool used in cases of Autism Spectrum Disorder, is being revised in 2012.  Several mental health experts are pushing for the Asperger’s Syndrome diagnosis to be removed from the DSM and essentially folding into the high functioning Autism category.

Many mental health experts disagree, however, as do families who are affected by Asperger’s Syndrome.  They feel removing variations from the spectrum diagnosis will lead to added confusion instead of demystifying Autism.

In this article, you can read the thoughts on both sides of the issue from parents, experts, and Autism advocates.  There seem to be pros and cons from all viewpoints.

Do you agree?  Should Asperger’s Syndrome remain on the DSM as part of the Autism Spectrum Disorder?  Read more about it by clicking this link:

http://www.theautismnews.com/2009/11/04/aspergers-parents-resist-name-change/

*People mentioned as having Asperger’s Syndrome may or may not have actually have been diagnosed with an ASD.

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2.  In the News – Is Autism on the Rise?

Just as Autism Advocacy groups have been claiming for the past few years, Autism is rising, and now the Centers for Disease Control and Prevention is in agreement.

A recent study by the CDC raises the count to 1% of all 8 year olds.  This is a 57% jump from just four years ago.  If you translate these percentages, you will find that one in every 110 children is diagnosed with some form of Autism Spectrum Disorder.  That comes down to one in every 70 boys and one in every 315 girls, overall, with a diagnosis of ASD.

So, what is the cause of this increase? Because the diagnostic criteria for Autism Spectrum Disorder is subjective, it is difficult to say with accuracy what is causing this increase in cases.   The Centers of Disease Control and Prevention say there is no absolute cause for this increase, but do site the improvement in diagnostics and awareness as one reason for the swelling numbers.

You can read the article and the full report by the Centers of Disease
Control and Prevention by clicking this link:

http://www.theautismnews.com/2009/12/19/kids-autism-on-the-rise-research-shows/

*People mentioned as having Asperger’s Syndrome may or may not have actually have been diagnosed with an ASD.

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3. Prominent People Linked with ASD -  Actor Matthew Laborteaux

Depending on your age, or possibly your cable or satellite television subscription, you have most likely seen an episode of “Little House on the Prairie”, starring the late Michael Landon.  This popular American television series was a huge hit back in the 1970’s and many people, young and old, still watch the syndicated episodes.

The role of Albert Ingalls, the son of Michael Landon’s character, was played by a young American actor named Matthew Laborteaux.  His role on this hit series is one that he is most remembered for, and fondly remembered at that.

Matthew’s bio includes that he was born in 1966 with Autism and a congenital heart defect.  Another article states that he was considered Autistic until he was five.  You can read more about Matthew Laborteaux by clicking the following links:

http://www.imdb.com/name/nm0479612/bio

http://www.people.com/people/archive/article/0,,20071697,00.html

*The person mentioned above may or may not have Asperger’s Syndrome.
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4. A Few Extras …

a.) Summer Camp Pennsylvania

“Hi Dave,

I came across your site and thought that your members might like to learn about Summit Camp, which caters towards children with issues of attention, including aspergers.  Here’s a short article on our camp.  We’re located in Pennsylvania.  Is this something you can post?

Thanks,

Gene …

We all know that raising a child with special needs presents challenges at almost all stages of development.  Whether in interacting in social settings, dealing with everyday tasks, or learning critical life skills, a special needs child needs to be in the appropriate environment to reach the heights that we all hope for. As Senior Director of Summit Camp, I’ve seen countless of these children attain goals and reach new heights in the warm and encouraging atmosphere of our summer camp, travel, and school year weekender programs.

With our “Magic On the Hill,” Summit Camp has been meeting the needs of special needs children since 1969.  Located in Wayne County, Pennsylvania, our camp and travel programs serve children ages 8 – 19 with attention issues.  The various diagnoses that a camper may have include verbal or non-verbal learning disorders, AD/HD, Asperger’s Syndrome, Tourettes Syndrome, and/or mild mood disorders.  We provide a consistent environment for these children that enables them to better establish meaningful and mutually rewarding relationships with other children – something you know is often times difficult for them in the traditional school environment.

We understand that each camper is unique and has his or her own challenges that we work to overcome in order to meet the basic needs for acceptance, recognition and respect.  But throughout all of the various sessions and activities, certain goals are constant – we look to establish and reinforce feelings of success, confidence, enthusiasm and self-worth in all of our campers.  These are the traits that they may not attain in the typical social environments, and I believe we can fill those voids.

Through traditional camping activities – sports, arts and crafts, hiking, and other camp programs, we work to help them attain these traits.  Yet, each program is geared towards developing the social interaction skills of the camper and allowing them to identify their special interests. Our staff is masterful at bringing each camper on at their own pace while also involved with their bunkmates.  Older campers also have the opportunity for “personal development training,” such as baby sitting or auto repair, and during summer sessions they take part in three-day overnight trips, while younger campers can participate in afternoon daytrips.

We’ve seen children build friendships, improve social skills, gain independence, and learn the life skills that we all need to succeed.  Through it all, the safety of our campers is paramount. We have 250 staff to supervise and nurture the maximum 300 campers our camp hosts at a time.

I encourage you to check out our website and learn more about Summit Camp and the “Magic on the Hill.”  It’s made a difference in the lives of so many special children and their families, and it may be the perfect fit for your child as well. For more information visit www.summitcamp.com.

b.) Trip for ASD Kids from USA to UK

“ From: Dr. Beverly Daley

I   am excited to announce that Childrens Hospital Los Angeles has created  a program in England this summer specifically designed for  young people with ASD. Limited to 15 participants and staffed by Jill Hudson, two post-doctoral students, a leader from Putney Student  Travel and me, the group will visit Oxford and London for ten days in  July. It will be stimulating, educational, and a lot of fun!

More details at http://www.aspennj.org/pdf/events/putney-student-travel.pdf

c.) Guardianship Court

“ Dave – Wanted to share with you:

We just finished with our guardianship court hearing for our 18 yr old Asperger son. Don’t know if you’ve mentioned this on your blog before, but we were advised by our CARD representative to file as “guardian advocates” for our son, to be able to continue to assist him with major decisions (residence, school, medical consent, etc) and handling finances. In the US, when someone is 18, they make their own decisions, and he’s not yet mature enough or ready at this time. We can also file claims for benefits on his behalf with Social Security, etc. So it’s a good thing, and I recommend it to other parents of teen aspies.

Thank you for all the wonderful posts, they are so timely and uplifting, it is a blessing to have this virtual support group and see what other parents have to say 24/7!

Regards,

Mercedes”

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I hope this month’s newsletter has intrigued you and provided new and useful information.

The next edition of the newsletter is due in February, 2010.

And as always … please send in any inspirational stories, any questions that you would like our team of experts to answer, any topics that you wish to be discussed, and news stories that you want to share VIA THE BLOG.

We will publish as many as we can.

Until next month………

Best Wishes

Dave Angel

Hello and welcome to this week’s blog post about Aspergers and sexual behavior.

Here it is …

Question

I want to teach my child about appropriate sexual behavior-but how?

Answer

Everyone wants to be loved.  Children seek love from their parents and eventually, they will seek love from their peers.  Children with Asperger’s Syndrome want to feel love and affection just like everyone else, but they are hampered by their inability to form solid relationships.   Building a strong parent-child bond early in life will help teach your Asperger’s child about relationships, love and the closeness necessary to form intimate bonds.  There will be more work to do later, as you’re realizing now.

Sexuality should be openly discussed at the appropriate level at all ages.  Once your child hits puberty, it’s time to talk about sexual behavior.  Talk, talk and talk some more.  Having a clear path of communication with your child will enable you to have conversations about important life lessons.  Make sure you respect his needs for adjusted communication.  Talking while walking for example, or while driving through town, will give him a chance to voice his thoughts without having to maintain eye contact.  Plus, he may be more willing to open up about his true thoughts and feelings when he knows you are not focusing solely on him.

Children with Asperger’s like to have the facts.  No cutesy stories, no made-up names and definitely no personal details.  Stick to clear, concise facts using proper terminology.  Have him make a list of the facts.  In addition, have him make a list of dos and don’ts in relation to sexual behavior.  This will appeal to his need for order. Here are some suggestions to start a list of do’s and don’ts:

•    I should stand a foot away from another person.  People need their space.

•    I should not touch a person’s face, hair, or body without permission.

•    I should not touch my own body in public.  Touching myself is private.

Find books on the subject of sexuality geared to children with Asperger’s or younger typical kids.  These books will be written and illustrated in a way that he can easily understand.

If your child is already a teenager or older, the book “Autism-Asperger’s & Sexuality:  Puberty and Beyond” by Jerry and Mary Newport; foreword by Teresa Bolick is a good place to start.  Written by a husband and wife team both living with Asperger’s Syndrome, this book will help guide your child (and you) through the challenging topics of puberty and sexuality.

Your child is going through major physical and emotional changes.  He may find it difficult to cope with these changes and how they relate to all areas of life.  His body and hygiene, friendships and dating, maturity and behavior will all be affected by becoming an adult.  With your guidance, he can make these changes and approach adulthood well educated on the subject of sexuality and proper sexual behavior.

Thanks for reading,

Dave Angel

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Articles posted this week at The Parenting Aspergers Community

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I am still trying to receive a diagnosis of Aspergers for my child. What should I do in the US or UK?

When you think something is “not quite right” with your child, it is best to follow through with the appropriate action. A parent knows his or her own child better than anyone else. That bond is there for a reason. It is the parent’s natural instinct to take care of the child’s every need. If you think that your child may have Asperger’s Syndrome, you should pursue the assessment process as soon as possible …

To read the full article go to: -

http://www.parentingaspergerscommunity.com/members/405.cfm

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How can my adult son with Aspergers find and keep a job?

We associate all of our self-worth on how successful we are in life. The right career, the perfect house, and good friends are all necessary for us to fit in. In reality, most people would be far happier with less if they could spend their days chasing their dreams instead of dollars. People with Asperger’s Syndrome spend their time concentrating on personal interests. This can be useful when it comes to finding a job …To read the full article go to: -

http://www.parentingaspergerscommunity.com/members/404.cfm

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How do I help instill confidence in my son with Aspergers as he continues to grow? (He’s a young adult now.)

Kids with Asperger’s Syndrome can definitely struggle with a lack of self-confidence. These kids are targeted by their peers in so many ways. They sometimes come across as ‘too good’, needing strict adherence to rules. They can also be highly intelligent, causing them to be labeled as ‘brains’. Sometimes clumsy, kids with Asperger’s are just different enough that the other kids at school resort to picking at them. Bullying is a huge problem for kids with Asperger’s. Add in the inability to make good social connections and you have a definite risk for low self-esteem …

To read the full article go to: -

http://www.parentingaspergerscommunity.com/members/403.cfm

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Hi and welcome to this week’s Aspergers article about social skills –

Question

What is the best way to teach social skills to my adolescent son who has Aspergers?

Answer

Asperger’s Syndrome makes it hard for people to handle social situations.  It is important to remember that a person can appear socially comfortable, using proper speech, good behavior, and impeccable manners.  However, these things do not make a person socially able.  Having these qualities will not help with the real issues of socialization.  You have to find ways to teach basic, age appropriate social skills so your son will feel natural among his peers.

Social skills therapy is used to teach real interaction within a peer group.  At school, your son should be able to participate in a social skills group.  This type of therapy is guided by a therapist and includes kids in the same age and social ability ranges.  The therapist will initiate conversation within the group, and then have the kids practice some basic pre-scripted situations among themselves.  They are given the tools they need during therapy to use in real-life opportunities.

Some schools have peer group shadowing.  Peer shadowing enlists the aid of a select group from the general education population, preparing them to assist children with Asperger’s in the daily communication and interaction skills they are missing.  The shadows are trained to break down the normal conversations that they automatically understand and deliver the skills in a step-by-step fashion.  For example, the peer is taught to ask about another child’s day in simple terms and then how to respond in a straight-forward manner to keep the conversation going.  The child with Asperger’s is then able to mirror the behavior he sees coming from his peer.  The peer learns valuable lessons in tolerance while the child with Asperger’s learns the basic social skills he so desperately needs. Not only will your son learn how to deal with social situations this way, he will also get a chance to interact with kids at school that may have never given him a chance.

Social stories are a very popular option for teaching social skills.  More often thought about for younger kids, you can now find them written specifically for the needs of the adolescent or teen Asperger’s kids.  Some are even in comic book form.  Your son may find these interesting, easy to read and effective.  Plus, he will be in control of the situations he learns about.  As he ages, he probably will not want his parents to know everything about what he’s thinking on a social level.

“Social Success Workbook” by Barbara Cooper and Nancy Widdows, is a good way to give your son more control of the situation.  The most common topics, including social cues, emotions, and meltdowns are covered in this engaging workbook.

Direct involvement is one of the best ways to reach kids this age.  Give your son ownership by allowing his input when searching for answers.  Adolescence is the time to encourage a bit of independence.  Let him know that he can learn to handle and even enjoy relationships.
Thanks for reading,

Dave Angel

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Articles posted this week at The Parenting Aspergers Community

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How can I work out what expectations are realistic for my boy with Asperger’s and what potential he may have for the future (he’s 13)?

When a baby is born, his mother’s eyes hungrily take in all of the details. She sees so much more than the tiny infant in her arms. She sees all of her hopes and dreams for his future. As he grows, his mother’s hopes and dreams for him grow with him. She wants to see him be the best T-ball player he can be and when she watches him play, she sees the major league player of the future …

To read the full article go to: -

http://www.parentingaspergerscommunity.com/members/402.cfm

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Will my son with Asperger’s be able to cope with college?

More and more teens with Asperger’s Syndrome are graduating from high school and making a seamless transition to college. Adjusting to college can be a challenge for all teens. Your son will be no different in that aspect. There is every indication that your son will be able to modify his thinking with a few guidelines and some help from you …To read the full article go to: -

http://www.parentingaspergerscommunity.com/members/401.cfm

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How can I decide how to provide opportunities for independent adult living?

The goal in life that everyone strives for is independence. We all want our children to be independent, making their own plans and decisions. We offer excellent guidance and support from a very young age to prevent as much struggle to learn basic social skills and coping strategies as possible. As our children grow up, we must take the steps necessary to help them achieve the ultimate goal of independence …To read the full article go to: -

http://www.parentingaspergerscommunity.com/members/400.cfm
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Hi there this week’s articles looks at Aspergers and bullying.  But before that I would like to say a big thank you to everyone who visited my January sale page and invested in one of my Parenting Guides in the past week.

Also another quick note – if you’ve got an Aspergers question that you want to ask and get answered on the blog in 2010 please take my survey  in the next few days at …

http://www.surveymonkey.com/s/3Q27SH3

OK on to this week’s Aspergers article –

Question

How can I help my daughter with Aspergers to deal with bullying and feeling like ‘she is an alien’ (her words)?

Answer

It is very common for children with Asperger’s Syndrome to feel different.  These children are very intelligent and the fact that they have struggles in many different areas is very obvious to them.  You frequently hear children and adults with Asperger’s refer to themselves as “from another world”.  They spend much of their lives trying to fit into a world that doesn’t seem to accept them.

Here is a child who has trouble making and keeping friends, may appear clumsy and awkward, is sensitive to sound or light, has strange obsessions she talks about all the time, and has difficulty with changes in routines or schedules.  All of these things are bombarding your daughter’s mind when everyone around her is going through the day happily in a group, while she watches from afar.  It’s not surprising she is feeling like an alien.

Because of the differences that make children with Asperger’s stand out from the crowd, they also frequently have to deal with bullying.  They are smart, capable of handling their school work for the most part, but keen on following the rules and doing what is right.  You will read about Asperger’s kids being labeled as geeky or nerdy.

A child who is being bullied may not realize that she is supposed to tell someone that it is happening.  When you struggle with communication, it is difficult to know when or even how to speak up.  She may be realizing for the first time that she has been a target all along.

Assure your daughter that you understand her statement regarding feeling out of place.  Tell her that there are ways to control bullying and come up with a written plan of action.  Talk to her about the specifics and help her see that she can find her way around these trying situations.

Involve your daughter’s school personnel.  They may be able to offer suggestions that can be added to her educational plan to make things easier for her, such as additional individual therapy or social skills classes.

Do some research and look for books and websites that you can use to help your daughter.  For example, “Perfect Targets: Asperger Syndrome and Bullying; Practical Solutions for Surviving the Social World” by Rebekah Heinrichs (foreword by Brenda Smith Myles) would be a good option for your situation.  Covering bullying on several angles, this book will help you teach your daughter exactly what constitutes bullying and what can be done to prevent it.

With help, your daughter can get past her feelings of alienation and helplessness.  Having the support of her parents and professionals will prove invaluable and in time, she’ll be feeling less like a target and more like the capable human being she is.

Thanks for reading,

Dave Angel

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Hi and welcome to this week’s Aspergers article (which looks at Aspergers and Sensory problems) – from a very, very snowy Portsmouth, England.

In the 13 years or so I have lived down here on the South Coast of England there has never been snow like it – I can’t wait to get out with my 2 and a half year old daughter tomorrow morning for some serious snow ball action!

Just a quick reminder if for some reason you didn’t get my email yesterday:

I am running a January Sale where all of my Aspergers Resources are significantly discounted – and there are now just 6 days left.

To find out more go to the following web page:

http://www.parentingaspergers.com/januarysale.html

And finally here’s this week’s article …

Question

How to cope with my son with Aspergers’ sensory problems?

Answer

Having a child with sensory integration issues can be a challenge for a parent. Sensory integration dysfunction is a neurological disorder where a person has difficulty processing sensory information. This difficulty can be on one of the five senses – hearing, sight, smell, touch, or taste – or in a combination of senses. Sensory integration dysfunction (SID) can include hypersensitivity as well as a hyposensitivity.

Children with SID have a difficult time navigating the world. Many children have a hypersensitivity to sounds. The vacuum cleaner will be too loud, or the hair dryer. Socks won’t feel right or they won’t wear shirts unless you cut the tags out. Many children with SID will only eat certain foods.

If you have a child who you feel has SID issues, the first step in coping with them is to get a proper diagnosis. The diagnosis can help you understand the depth and breadth of the issues. Consult your physician about treatment for the issues.

When you are coping with sensory issues at home, you’ll need to be patient and understanding of your child’s needs. It’s important to remember that your child is truly affected by sounds and smells and tastes that may seem perfectly normal to you. Learn to understand what situations cause a problem for your child. It is advisable to try to avoid those situations with your child, and if you do have to encounter them, work with your therapist to teach your child how to better cope with the situation.

Often, a child with SID, especially when he is very young, will react badly in a situation by doing something such as throwing a tantrum. When this happens, you’ll need to try to figure out what triggered the reaction. You’ll need to trace back the steps and try to discover the sound or the smell or the taste that set your child off.

Often, children with sensory issues have trouble adapting to school. The classrooms can be too loud or the cafeteria smells can be overpowering. Sometimes it can be the proximity of the other children that will upset a SID child. Work with your occupational therapist to come up with behavioral techniques to help teach your child how to better deal with these situations. Your occupational therapist will likely put your child on a sensory diet that will incorporate movement, sound and smells. In a safe environment, your child will be exposed to different sensory experiences.

A book entitled “Too Loud, Too Bright, Too Fast, Too Tight: What to Do If You Are Sensory Defensive in an Over Stimulating World,” by Sharon Heller, PhD, discusses how difficult life can be for people dealing with sensory issues.  The book contains two main parts – discussion of the issue and treatment options. Reading this book will provide you with some great information on how to cope with sensory integrations issues in your child.

Thanks for reading,

Dave Angel

PS – Don’t forget The Parenting Aspergers January Sale at …

http://www.parentingaspergers.com/januarysale.html

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