Welcome to today’s blog post with 5 great Aspergers tips:

1. The Rules Of The Game - I am just working my way through a series of great information resources entitled “The Rules Of The Game”. Which cover a whole raft of issues that children with Aspergers, come up against on a daily basis. Including emotions/feelings, body language, eye contact, mistakes, expectations, choices, bullies, disappointment and lots more too. They were written by Kerri Stocks; who is an Austalian mom to a child with ASD. And Kerri takes these key problem areas for children with Aspergers (in total there are over 40) and breaks them down into easy to understand stories for children. I hope to finish reading them in the next few days, and give you a more complete review later this week. But if you can’t wait then you can always check out Kerri’s website by Clicking Here

2. Morgan’s Story – Several months ago I received an email from Marilyn Rothschild who is the proud mom of her daughter Morgan, who has Aspergers. Aspergers has written a very insightful piece about her life which you can read by Clicking This Link She also has her very cool own website featuring her artwork which I highly recommend you view at http://www.morgansartwork.com/ So thank so much to Morgan and Marilyn for sharing…

3. Famous People with ASD – Following my article a few weeks ago about famous peole with Aspergers I got an email from Chantal Duport about an excellent book on this subject called “Different Like Me – My Book of Autism Heroes”. You can find out more on this book by Clicking This Link

4. Roller Coasters – Also on an artistic theme is a poem emailed to me by Denise McFarland. It was written by her 12 year old son with ASD who is home schooled. Enjoy…

Oh How Fun are Roller Coasters

There are many days that I seek the thrill;

That can only be met by a roller coaster hill!

The churn in my stomach, the wind in my face,

Amusement Parks are my favorite place.

It allows me to forget what’s wrong with me,

a peculiar disorder that others might see.

No bedroom to clean, no garbage to take out,

here comes the next hill get ready to shout!

Now that is what it is all about.

Sometimes it is troublesome just being me,

But the roller coasters will always set me free.

5. Video Taping Therapy Sessions – This next tip was emailed to me by Kris S. Johnson from Alaska:

“I thought I would give you an idea I participated in with my child with all his therapies that he has had….I with his therapist video-taped all the sessions. She learned to talk during them as if instructing me to do or why she was doing that part of the therapy, such as the goal or outcome of the need for different things…then I could use the session at home, in the school for the special ed teacher or aide to view and adapt his program using the same techniques…it helped expand what we did in that one hour session over his complete life areas and skills. And made use of what I was learning and sharing with others so we could be all on the same page…

I have told this to other folks in the same situation, they seemed surprised at the idea, but it is an idea that is so helpful for the complete picture and for documentation on growth and will help show over time the benefits of those therapies. And many times I come out of an hour session and cannot remember what happened in the beginning, this is one way to help my memory and his growth.

Thought I would let you know..do not know but it might help another family get a grip on all the things that are happening in a furious pace….for remembering… Many times I go back and look at the beginning of the taping in his early years and remind myself how far he has come with all the work he has had to do to get there…it is really humbling…”

Thanks for reading,

Dave Angel

This article is on my experience in England.  When my mother and I arrived in England we were both very excited for two reasons. One, to meet my employer Dave Angel and two, to experience a culture we have not seen before. The only downside was that our hotel room was very small and not what I was used to in the Americas.  Another problem was there was security everywhere because President Obama was in town to meet with Her Majesty.

What can I say, England’s historical background is as magical today as it must have been 600 years ago.   One of my favorite places was to see the Tower of London.  Just imagine this castle was constructed during the reign of Richard the Lionheart in 1189.  To stand on the grounds where battles were fought, Queens were beheaded and princes murdered, all for the crown of England.  Actually when you went through different rooms, you could feel a cold chill in the air. I swear when you close your eyes, you could imagine soldiers marching or arrows shooting (maybe in just my imagination).  One of the most intriguing facts that people do not know, is that there are 6 ravens that roam the tower grounds.  These ravens have had their wings clipped so they cannot fly.  It is stated that the ravens are The Guardians of the Tower.  Legend says that the kingdom will fall if the six ravens ever leave the fortress. It’s funny there are seven ravens on the grounds.  Just not to mess with the legends (very superstitious) they have a spare if one disappears.

Another interesting site was where Anne Boleyn was beheaded.  It’s funny how in the movies they portrayed a huge crowd surrounding her on her day of execution.  But actually only 5 people were there.  To show the queen some respect, Henry the VIII had her buried in the chapel of St. Peter ad Vincula inside the Tower of London.

The Crown Jewels were nice but the crowd inside this room made it hard to see them.  Too much pushing.

The British and Natural museums were very interesting.  They were huge inside and the best part is that any museum in London is free.
One of the other castles we saw was Windsor castle.  Boy, the Queen really knows how to live!  Between Buckingham Palace and Windsor castle, Her Majesty must have a lot of cleaning staff.  My mom kept saying she would not want to clean this house.  We saw the state apartments and St. Georges Chapel where 10 British monarchs were laid to rest including Henry the VIII and the Queen Mum.

By now you are probably asking what about Dave Angel?  We met Dave and his daughter on the Wednesday.  I was actually kind of scared.  What if he doesn’t like me in person, what if I make a fool of myself?  But my fear was overcome with excitement, to meet the man who had helped me so much in the past few years.   My first impression of him was he was nice, but while talking with him he reminded me of my father.  I know this sounds dumb, but the way he acted towards me, made me feel safe.  My dad was the only one who could do this.  He did not judge me and actually asked how I felt about things.  Dave brought his daughter, who was as sweet as honey.  I enjoyed playing games with her and our favorite was dinosaurs.    On this day I did the video for the Aspergers site.    Had a great time!!!!  Later that week Dave invited us to Portsmouth.  We saw the D-Day museum and the English Channel.  We had a wonderful day of site seeing.  I once again want to thank Dave for all his help and understanding.
And most of all his encouragement !!!!!!

Matthew Readman

Parenting Aspergers Newsletter    
July 2011        

Welcome to the July 2011 edition of “The Parenting Autism & Asperger’s Newsletter”. 

Inside this edition, you will find:

1. Hot Topic of Discussion – Summer Fun

2. In the News – Summer Safety

3. Prominent People Linked with ASD – Surfer Clay Marzo
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1. Hot Topic of Discussion -   Summer Fun:  From ESY to Camps to Family Vacations

As the school year winds down, families begin to think about ways to fill those lazy days of summer.  For kids with Autism, these unstructured days can lead to problems.  With a little planning, families affected by Autism can have a joyful and fun-filled summer.   Public schools have ESY (Extended School Year) offerings to help keep skills at appropriate levels and to provide structure.  Summer camps, outings, and family vacations are often successful adventures for children with Autism and Asperger’s Syndrome.  Below you will find a selection of web links to help get your summer fun started!

This is an article about a boy’s trip to surfing camp:

http://www.theautismnews.com/2011/06/08/autistic-son-finds-peace-on-the-waves/

These links contain details about special summer camps, museum trips, family vacations, and ESY information:

http://autism.about.com/od/schoolandsummer/ht/summerhowto.htm

http://www.child-autism-parent-cafe.com/autism-camps.html

http://autism.about.com/od/copingwithautism/a/autismmuseums.htm

http://autism.about.com/od/copingwithautism/ht/vacationstep.htm

http://autism.about.com/od/termsanddefinitions/g/ESY.htm

 *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 -   Safe Summer Times

Every summer the newspaper is filled with stories of drowning children and missing children.  Often, the media mentions Autism in relation to these tragedies. 

Children with Autism often wander away from home, making summer outdoor play a safety issue.  In addition, the attraction of water in pools, ponds, and lakes is another big risk that escalates this time of year.  You can read about summer safety and Autism by clicking each of the following links.   Safe kids are not an accident!

http://www.autismkey.com/summer-safety-for-children-with-autism/

http://www.care2.com/causes/health-policy/blog/summer-safety-for-special-needs-kids/

http://theautismblog.seattlechildrens.org/safety-skills-for-participating-in-community-activities/

http://www.safetynetsource.com/2011/05/19/summer-safety-and-children-with-autism/

*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- Professional Surfer, Clay Marzo

Twenty-one-year-old Clay Marzo has always been obsessed with water.  A talented swimmer, he began to focus his energy on surfing as a pre-teen.  He turned his talents and obsession into a lucrative career as a professional surfer.  Clay was diagnosed with Asperger’s Syndrome at the age of 18.  He helps out with Surfers Healing Camp, a surfing camp for children with Autism.  You can learn more about Clay on the following websites:

http://en.wikipedia.org/wiki/Clay_Marzo

http://abcnews.go.com/WN/autistic-surfer-clay-marzo-masters-waves-struggles-land/story?id=10477337

http://www.surfermag.com/industry-news/komunity-project-welcomes-clay-marzo-to-their-international-pro-surf-team/

 *The person mentioned above may or may not have Asperger’s Syndrome.
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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 August 2011.
      
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

Sensory integration dysfunction is a neurological disorder that affects a person’s sensory systems.  SID causes an inability to organize and react properly to sensory input.  Some children are diagnosed with Sensory Integration Dysfunction alone, and for others, SID is a symptom of something bigger, like Autism or Asperger’s Syndrome.

Children with Asperger’s Syndrome usually exhibit many of the same characteristics as a child with Sensory Integration Dysfunction, among other Autism spectrum characteristics.  Here are some common challenges caused by Sensory Integration Dysfunction.

* A child may be overly sensitive to touch, tastes, smells, and sounds.  On the other hand, a child may be under-sensitive to touch, tastes, smells, and sounds.  Many children display a mixture of the two.  He may tolerate a fair amount of touch but cringe and cover his ears because of sounds so faint you can barely perceive them.

* A child may have poor balance, unable to stand on one foot, or walk a balance beam. 

* A child may need to run and crash into things, or need lots of pressure on his body to understand how his body takes up space.

* A child may need to spin, rock, or swing to find comfort, or may find these activities extremely frightening.

* A child may have a strange, uneven gait when walking, or appear clumsy and unsure of himself, physically.

Many people do not realize the connection between Sensory Integration Dysfunction and behavioral problems.  The affects of SID carry over and interfere with a child’s ability to concentrate, ability to regulate movement needs, emotional security, and flexibility.  The sensory systems are highly integrated in all aspects of a child’s development.  When there is a failure within these systems, all areas of development are affected. 

Many occupational therapists are trained in Sensory Integration Dysfunction therapies.  If your child has access to occupational therapy, his therapist will most likely create his sensory profile.  This profile will show you exactly which sensory systems are most affected and whether they are hypersensitive or hyposensitive.  With this information, you can create a home program filled with fun activities that will greatly benefit your child. 

If your child is not able to see a therapist for Sensory Integration Dysfunction, you can find the information you need by searching for information on the Internet or at the public library.  Many books have been written for parents of children with sensory issues.  One such book is “The Out-of-Sync Child”, or you may be interested in the video, “The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction”, by Karol Stock Kranowitz, M.A.  This DVD contains information that provides a drug-free approach to treating SID. 

Thanks,

Dave Angel

Following on from last week’s email I want to tell you today about the visit that I made, as a social worker, to a family in the summer of 2006.

The visit had such a profound effect on me that I decided to set up The Parenting Aspergers website.

At the time I was working as a social worker on a local team for children.

I was asked to go and carry out an assessment of a teenaged boy of 14 who I’ll call Alex (but that’s not his real name), and his family.

The reason for this was that several weeks earlier Alex’s mum had phoned social services absolutely desperate for help.

Because Alex was really struggling at school, was feeling very low and depressed, and was being very aggressive towards his older brother.

Well when I turned up, as often is the case, Alex behaved impeccably.

Sure he didn’t say a lot to me, and wasn’t able to give me eye contact…

But he was polite and what he did say was honest and truthful about his current situation.

He said that he had no friends at school, that he has been bullied and that the teachers “pick on him”.

He really couldn’t see the point of going to school.

Outside of school was no better as he had very little interest in doing anything, except playing on his computer games and doing activities connected to his special interest of math and numbers.

Alex did not really do social activities and again just couldn’t see any point anyway.

So he was in quite a bad way emotionally and at 13 was pretty much opting out of life as best as he could.

Now Alex’s mum was in a really bad place too.

She would burst into tears on numerous occasions as we talked about the situation.

She had very little support as she and her husband (whom she strongly felt had Aspergers too) had split up several years before.

Her own family had also become less and less interested in helping, due to them finding Alex so difficult to cope with.

So she was pretty much on her own dealing with her son’s school problems, his emotional problems and behavioral problems. And it was tough.

And the behavioural problems were going on everyday in her own house – with Alex often being physically aggressive to his brother, and also to his mum.

Now if ever there was a family in need of help it felt like it was this one.

In fact I even got chance to speak to Alex’s brother who was lovely too.

He really tried to downplay the assaults on him, and almost appeared to think that it was OK for his brother to hit him, because of the Aspergers.

Overall it was clear he was just trying to be very protective of his brother and not get him into any kind of trouble.

So I desperately wanted to help this family as it just felt that they were all really suffering.

Anyway I went back to my boss to try to argue the case for the family to receive some support.

But as I expected it was turned down on the basis of Alex’ high IQ and lack of any physical disability.

This is a problem that I have faced time and again with children who have Aspergers.

Because of the invisible nature of the disability, coupled with a good IQ and mainstream schooling, they generally miss out completely for any help from social services.

So because I knew that the family would be getting no official help I decided to at least make use of the internet at work and find some helpful information for them.

Now when I looked there was no shortage of information on Aspergers. But it fell squarely into one of two categories:

1.    Either written by academics citing lots of impressive studies and theories, but written in a manner that was pretty tricky to understand OR…

2.    Autism organisations which often had good basic information but didn’t have specific strategies or techniques for parents to use for dealing with situations that they are faced with.

Eventually after a lot of digging around online I managed to find a few helpful resources and organisations to put the family in touch with.

But it all set me off thinking more about this huge lack of specific resources on the web.

Which led me to researching and writing my first resource “The Parenting Aspergers Resource Guide”.

And over time that has led to the weekly Aspergers blog, further volumes of “The Parenting Aspergers Resource Guide” and The Parenting Aspergers Community website.

And most recently my interview series with various Aspergers experts (which I am glad to say will finally be available in the first week of June).

Now ultimately I don’t know what happened to Alex and his family because, sadly, as I outlined earlier the family never received any more support from social services.

But I hope that one of the local organisations I put them in touch with was able to help out.

And that particular day certainly changed my life and I know that it has also helped a great deal of other parents around the globe, whom I am happy to have helped (and continue to help) from my website.

So I hope this second message has given you some further useful insights into my own story and how Parenting Aspergers came about.

Until next week,

Dave Angel

Dr. Alison Kawa is a Child Psychologist  from Los Angeles who specialises in the assessment of  children on the autistic spectrum, and trained at UCLA Autism Evaluation Clinic. She also teaches future psychologists at the prestigious Reiss Davis Child Study Center at  Vista Del Mar, California.

I recently interviewed her on the subjects of Aspergers Syndrome and Diagnosis. She gave me some fascinating insights from her role as both a clinician and educator. So I want to share some of the best points from this interview with you below…

The Diagnostic Process:

I asked Dr. Kawa if she had any advise for parents who are going in for an assessment of the child. Here’s what she said:

“One thing that I always advise parents to do is to look through their baby books and watch their old home movies because a lot of times we forget, forget about things that are painful. And when you have a child who is not interacting with you and you’re not getting as much social reciprocity, you’re not getting as much back from them, a lot of parents will sort of block that out. It’s hard. And so I frequently will have these assessment meetings with parents and then I’ll give them a homework assignment. I’ll say, “Go home, go watch your movie. Go watch your kids’ second birthday party and their third birthday party. Go watch Christmas. See how they work. See how they are interacting with you. Look through your baby books. Help to jog your memory,” because that early history is such an important part of the diagnostic process. It’s also very important for helping to differentiate Asperger’s than say a child who is very, very anxious and maybe has some obsessive compulsive traits”

Explaining Aspergers:

Another question that I asked Dr. Kawa was “Is there a quick and easy way that you would use to describe Asperger’s to other people? Dr. Kawa replied:

“Especially for the siblings of children, I go for:

 ”Let’s talk about everybody in the family, let’s talk about what they’re good at, and what they are not so good at.”

“Let’s talk about the things they do that’s really helpful, and the things they do that’s really annoying.”

You know, and so, to just sort of put things into perspective and make it not because it’s a dirty word. And then you can just sort of explain, that in your brother’s case, the things that he’s good at, the things that he’s not so good at, the things that he does that’s really helpful and the things he does that really get out on your nerves, there’s a name for that. And that name is Asperger’s. That way you’re also emphasizing the positives. I mean, a lot of times there are things, maybe you have a child with Asperger’s who’s very compulsive about keeping things neat and clean. And so you can say, “You know how your brother’s way better in keeping his room clean than your are?” I mean, the last thing you want for the sibling to take away, is that there’s something wrong. Or my sibling is somehow defective. “

What Behaviors Are Due To Aspergers?

I told Dr. Kawa that a lot of parents ask me “which behaviors are down to my child’s Aspergers, and which are due to something else?” and asked her thoughts on this issue. She said:

“You know what, I don’t think it matters. I don’t think it matters because either way, good behavior is acceptable and  bad behavior is unacceptable, and it’s up to the parents to call it. And there’s no way of knowing whether this is, you know, you’re more Asperger’s, your child got rigid and is having a tantrum, or if this is a mood swing associated with puberty. Who knows. Either way you have to learn to control your temper. And they don’t get a pass. You’re not going to say, “Oh well since you have Asperger’s, then you can run around the house, banging on all the doors when you get mad.” These children are born into our world, into our society and your job as the parents, for all of your children is to socialize them, one of your main jobs. And so, you know, I think that it doesn’t necessarily matter – what’s just a kid being defiant because they are testing the boundaries of authority or what have you.

Behavior Support Plans

Here’s a suggestion Dr. Kawa made about behaviour support plans…

“Sometimes, I’ll counsel the family to instead of just doing a positive Behaviour support plan for the child on the spectrum, I’ll say, why don’t you do it with all of your kids?  You know, have a jar on the top of the refrigerator and everybody gets the marble when they do something good and when it gets to a certain line, the whole family gets to vote on what to do with them.”

Causes of Aspergers

Dr. Kawa said the following when I asked her opinion on the cause of Aspergers:

“You know, the answer to that is right now, all of the research is pointing to a genetic component. It seems to run in families. There are families where there will be one child possibly, but nobody in the extended family has any sort of a history and so it’s not completely genetic. We think that there might be a sort of genetic predisposition and then an environment trigger for it but I would reassure parents that it’s nothing that they did. It’s not their fault. It’s not that they didn’t hold the baby enough as an infant or things, bottle-fed instead of breast-fed or anything like that but it’s just, you know, it is what it is and there is no one to blame.”

I hope that these insights have been helpful.

In around 2 or 3 weeks time all of the 6 Aspergers Expert Interviews (with Dr. Tony Attwood, Dr. Stephen Shore, Dr. Allison Kawa, Dr. Joseph Shrand, Wendy Lawson, Anne Miles) will be available… so watch this space.

Thanks,

Dave Angel

PARENTING ASPERGERS NEWSLETTER April 2011

Welcome to the April 2011 edition of “The Parenting Autism & Asperger’s Newsletter”.

Inside this edition, you will find:

1. Hot Topic of Discussion – Autism Awareness Month

2. In the News – Light it up blue for Autism!

3. School Teacher with Aspergers Update

4. The REAL Royal Wedding

5. Prominent People Linked with ASD – Bob and Suzanne Wright, founders of Autism Speaks

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1. Hot Topic of Discussion – April was Autism Awareness Month All over the world, people of all races and religions have come together in the name of Autism awareness during the month of April.  People with knowledge of autism have have the opportunity to share that knowledge with others. Awareness means knowledge and knowledge means power. Talking about Autism raises research funding, which in turn, puts us one step closer to answers. Real answers.

You can find out more by clicking the following links:

http://www.medicalnewstoday.com/articles/221046.php

http://www.autism-awareness.net/autism-awareness-month.html

http://www.autism-society.org/news/education-assistant-secretary.html

 *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 – Light it up blue for Autism! April 1st and 2nd kicked off Autism Awareness Month with the Light it up blue campaign. The goal this year is to bathe the world in a sea of blue, from the tallest skyscraper, to the smallest cottage, to babies in blue rompers, to daddies in blue tee shirts. You can read about Light it up blue and the organization behind the movement, Autism Speaks, by clicking the links below:

http://www.theautismnews.com/2011/04/01/5-questions-shedding-light-on-autism/

http://www.examiner.com/autism-parenting-in-hartford/autism-awareness-month-going-blue-are-you

 http://www.lightitupblue.org/

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

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3. School Teacher with Aspergers Update – The legal case surrounding Connecticut teacher with Aspergers, Dr. Wollkind continues. Earlier in the month several former pupils gave positive testimonies about Dr. Wollkind and his classes. It is now due back in court in June, as ever I’ll keep you [posted. To read more on the latest go to

http://www.housatonictimes.com/articles/2011/04/14/news/brookfield/doc4da777721d91e504125030.txt?viewmode=fullstory

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4. The REAL Royal Wedding – Well the Big Day for Kate and William has now been and gone. But I came across this excellent “footage” on You Tube of the wedding, which is well worth watching…

http://www.youtube.com/watch?v=Kav0FEhtLug

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5. Prominent People Linked with ASD- Bob and Suzanne Wright, founders of Autism Speaks and grandparents to a child with Autism In honor of all their hard work, our focus this month is on Bob and Suzanne Wright, the founders of Autism Speaks. When the Wrights learned their grandson had been diagnosed with Autism, they could not just sit back and do nothing. They threw their time and money into a new project, one that would bring awareness and answers to the puzzle that is Autism. They adopted the puzzle piece as the logo for Autism Speaks and never looked back. You can read more about the Wrights in the following links.

http://www.autismspeaks.org/about_us.php

http://www.time.com/time/specials/2007/article/0,28804,1733748_1733756_1735237,00.html

*The person mentioned above may or may not have Asperger’s Syndrome.

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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 May 2011. 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.

I will publish as many as we can.

Until next month…

Best Wishes

Dave Angel

This week’s article covers some key points that I learned from a recent interview with Wendy Lawson. If you’ve not heard of her; Wendy is originally from the UK but now lives in Australia. She is an adult who is diagnosed on the autistic spectrum. But this diagnosis did not come until well into her adulthood. She had previously been misdiagnosed with Schizophrenia for years, and has sadly spent many years in some rather grim psychiatric institutions as a teenager and young woman as a result.

But Wendy is a hugely positive person who now shares a whole variety of her experiences, thoughts and ideas on Autism and Aspergers Syndrome, for the benefit of all. She is the author of 8 books about ASD, a prolific poet, international speaker, and advocate for children and adults on the autism spectrum. She shared some really helpful information with me during our interview, which should be available to listen to in full (along with all of the other recent interviews I have carried out) in the next few weeks. But for now here’s:

5 Top Tips from Wendy Lawson

Tip 1 – Auditory learners. It is pretty much conventional wisdom that things like visual charts and timetables are a great thing for children with Aspergers, which they are. But Wendy points out that this is not a “one size fits all” approach. For the many children with Aspergers who are visual learners it is indeed a great approach. However if you are an auditory learner (i.e. you learn best through hearing information) then visual charts are going to be clearly less helpful. So beware of any general approaches recommended for your child, and think first if they fit your child’s particular style of learning.

Tip 2 – Can and Do. When it comes to language Wendy told me that words like “can and can’t” and “do and don’t” are really not helpful for children with Aspergers. If, for example,  you say “you can’t do that anymore” to the literal thinking child with Aspergers, you will appear to be lying. That’s because to the child’s mind he CAN do that, it’s just that you are not allowing him to. So instead of “can/can’t” or “do/don’t” use words like allowed – “I am sorry but you are not allowed to do that”.

Tip 3 – Research the professionals. As I mentioned before Wendy Lawson was misdiagnosed for many years with Schizophrenia. This was at least in part due to the lack of experience in ASD, of the psychiatrist evaluating her at the time. As part of the diagnosis Wendy was asked “do you hear voices?” and being a good literal Aspergian thinker she said “yes” (thinking to herself, of course doesn’t everyone!) But Wendy thought the question was referring to the voices we all hear everyday from people speaking to us and around us. Whereas the psychiatrist was obviously referring to auditory hallucinations (ie hearing voices in our mind), which was something completely different. So the key lesson is to make sure that whatever type of professional you consult for your child (be it a psychiatrist, psychologist, speech language pathologist, occupational therapist etc.) that they have significant and specific experience in working with children with Aspergers.

Tip 4 – The literal use of time. Another part of the assessment process that went wrong for Wendy Lawson was that she was told to read through certain pieces of information, and the psychiatrist would be “back in a minute”. Now inevitably the psychiatrist was not precisely a minute and this caused significant unease in literal, black and white thinking Wendy. So much so that Wendy said that the longer that the psychiatrist was over the “agreed” one minute, the harder it was for her to concentrate on the test. Because Wendy would become more and more consumed as to why the “one minute” was not being stuck to, and the difficulties this caused her. So be mindful of setting any exact time scales with your child with Aspergers.

Tip 5 – Avoid your natural impulses. Wendy said that one of the biggest mistakes that parents of children with Aspergers can make is to assume that their child would want the same as they would in a set situation. For example if a parent were upset and disappointed then they would naturally think “I want to be hugged at this point to make me feel better.” But to think that the child with Aspergers would want to be hugged whilst upset, may well be  a mistake. What they may need is time and space to be by themselves to relax and process what has happened. So it is important that they are given this opportunity if required. Even though this may go against the parent’s natural impulse to hug the child.

I hope these tips have been helpful,

Dave Angel

Following on from the past few weeks, I have another article featuring some of the best tips and tricks that I received from a recent Aspergers interview. And following some previously well received articles on Schonda Schilling, Dr. Stephen Shore and Anne Miles; next up is Dr. Joe Shrand and family.

Yes …  and family! I interviewed Dr. Joe, his wife (Carol) and son Jason all on the same phone call. It was a slightly odd experience interviewing 3 people at once, but they were excellent and made it a lot of fun. It always amazes me that I can sit at my computer in the South of England and interview 3 people in the USA over the internet and record it (but then I am easily impressed!)

Now by way of introduction Dr. Joe Shrand is a child psychiatrist and educator at Harvard University. He is also a well known lecturer who has spoken at such events as The Aspergers Association of New England, American Academy of Child and Adolescent Psychiatry, and the highly prestigious Brain Conferences. And perhaps even more impressively he was a child actor who played “Joe” in the original children’s cast of the PBS series “ZOOM”!

His wife Carol is an advocate who has played a very active role in helping to shape educational systems for children with ASD in their local area of Massachusetts. And finally is Jason who is 20 years of age, attends University, has a good set of friends, has a number of talents, and is diagnosed with Aspergers Syndrome.

The whole family were a lot of fun to talk to, and very well informed on a number of topics around Aspergers. So here’s 5 great tips that they shared:

1.    Theory of Mind - Dr. Shrand feels that one of the biggest issues for children with Aspergers is what is known as “theory of mind”. This is the ability to be able to understand that you have your own mental states such as beliefs, intents, desires, pretending, knowledge, etc. And to be able to understand that others have beliefs, desires and intentions that are different from your own. He feels that this is a really core issue for children with Aspergers, and they do struggle with this area. But he feels that with time and sufficient support/teaching children with Aspergers can begin to address this issue and improve immensely. Which brings me nicely to tip number 2…

2.   Gaining Social Skills – Jason Shrand said that when he tells friends that he has Aspergers; they are genuinely surprised as they don’t see him as someone who struggles socially. Which is a huge testimony to him, and to how his parents have supported him to gain the appropriate skills. Just some of the things that they have done over the years is working with facial recognition cards (for emotions), practicing conversations with a next door neighbour, social autoposy (where they look back on social situations as to what Jason did right and wrong), and weekly social tutoring at school (which was only provided through continued pressure on the school from Carol).

3.    Be a Proactive Parent – Carol Shrand is a fierce advocate for Jason and is very proactive both at home and in the education system. One helpful tip from her was to really get involved with your son’s friendship making at an early age. So Carol went out of her way to befriend other parents, and proactively manage play dates with other children. Because left to their own devices in all likelihood children with Aspergers would not have these play dates, and if they did they would not be positive experiences. So as a parent it is crucial to be a strong advocate for your child.

4.    How To Tell Your Child They Have Aspergers – For those who are considering telling your child that they have Aspergers for the first time, the Shrand’s had some great advice. They felt strongly that this should not be rushed but that the parents should be CERTAIN they understand Aspergers and what it means for their child before attempting any disclosures. Once a parent is really onboard with the issues and knows how to explain Aspergers in a very positive way, should disclosure be attempted.

5.    Have A Positive Approach – The final tip was more about attitude than anything. The family were all very happy and positive, and had great humor which no doubt has served them well along the way. They do not view Aspergers as “debilitating” rather just a different way of seeing things, and Dr. Shrand said that “Aspergers kids are remarkable kids that can bring just so much joy”. Obviously the family’s positive attitude was backed up by a great deal of hard work, and well thought out interventions with Jason. But the results as I am sure you will agree are impressive.

I hope these 5 tips have been helpful for you,

Cheers,

Dave Angel

PS You can find out more on Dr. Sharnd’s work at http://www.drshrand.com/

As you may know I recently interviewed Dr. Stephen Shore – who is an incredibly knowledgeable guy on all things ASD.

He has the fairly unique perspective of being an adult on the autistic spectrum, an international advocate and speaker on ASD, published author, and Assistant Professor of Special Needs Education at Adelphi University in New York.

And as well as all of that he is a very engaging and entertaining guy to talk to.

In his interview he gave me tons of great tips for parents, and personal insights from being both a child and an adult on the autistic spectrum.

His own personal story is that at a very young age he was diagnosed with “Atypical development with strong autistic tendencies”.

At the time he was felt to be “too sick” to be living at home, and it was recommended that he would need to be placed in an institution.

However his parents put him through what he described as “an early intervention home treatment program” when such programs did not really exist. They just did what they thought was right at the time.

This helped Stephen to develop hugely, and then his parents persuaded the local school to take him on, but a year late. And so he then joined the education system.

He worked his way through the education system, culminating in the hugely impressive achievement of gaining a doctorate at Boston University.

And has been involved in advocacy, speaking, writing and education ever since.

One really great tip that he shared with me was a 4 step approach for explaining an Aspergers diagnosis to your child;

1.Becoming aware of strengths – This involves chatting with your child about his or her strengths. This sets up a positive slant to the whole process.

2.Identify strengths and challenges -  This step involves making a list of strengths and challenges. Where possible you need to find a strength to help accommodate for challenges (eg if a child struggles with hand writing, they may be able to type on a computer much quicker).

3.Non-judgmental comparison – In this section there is discussion about other people’s strengths and needs. These can include family members and a few famous people.  Stephen will often mention Bill Gates who it is rumoured to be on the autistic spectrum. However this is generally a quick mention and not discussed in huge depth – to avoid the person feeling that they have to live up to this hugely successful person.

4. Introducing the diagnosis of Aspergers – Steven will then go on to  talk about scientists and doctors who study peoples’ characteristics.  Then he will say that the name for a particular set of characteristics is Aspergers. And use this as a way to introduce the diagnosis to the individual.

I really like the way that Stephen puts this 4 step approach together, and the fact that it is underpinned by his own personal experiences, and that he has also used it with other people to tell them about their diagnosis.
 
This was just one little idea in many that Stephen passed to me, and I hope it is helpful to you.

The whole interview will become available (probably next month) for you to listen to; but listen out for more on that.

Stephen also has some great videos available on the internet and one where he discusses his 4 step approach in more detail can be seen at:

http://www.parentingaspergerscommunity.com/public/Aspergers_Video__Stephen_Shore__Should_you_tell_your_child_about_hisher_autism_diagnosis.cfm

Thanks for reading,

Dave Angel