More on Leading the Horse

One of the parents in the AANE email threads has written that her young adult son had attended an AANE group meeting, but did not really “like to be around people with AS, who are obviously different.” This is really one of my concerns with getting my son to attend an activity or support group. Nonverbal Learning Disorder is not technically on the autism spectrum, and – without that label – NLD seems less threatening, less of a “disorder.”

Yet some of the behaviors and quirks are very similar. Given that one of my main concerns is my son’s struggle with social relationships, I believe there would be some value to meeting other young adults facing the same difficulties, even though he doesn’t recognize any such difficulties in himself. Moreover, he usually seems comfortable with the social connections he does have – whether through peers (virtual through Facebook, the Ultimate team, etc.) or through relatives and other adults.

I’m hoping that the horse will take a drink some time this summer; he really might like it.

You Can Lead a Horse to Water

Far be it from me to be negative before I’ve even broach a subject with my son (just ask my daughter!).

But all these great programs and groups I’ve been getting information about since joining AANE won’t help him at all unless he chooses to join in. For example, AANE offers a regular meeting of young adults (primarily 20-30 year-olds) on the second Thursday of each month to share pizza and play games; they have open discussion groups on the fourth Wednesday regularly. These programs take place fairly close to our home, and continue year-round.

I assume the people that attend these meetings have also had difficulty in the past making social connections, but sometimes my son does not see that as a problem for him. So I don’t really know whether he’d want to try something like this or not. I hope he and I will at least meet with the director of adult services when he gets home for the summer. One step at a time.

Outside of the Textbooks

More than one website that I browse frequently picked up on this article (“What They Should Have Taught You in School – Professional skills you wish you had learned”) that was recently posted on MSN’s careerbuilder.com. The URL follows:

http://msn.careerbuilder.com/Article/MSN-2163-Workplace-Issues-What-They-Should-Have-Taught-You-in-School/?cbsid=e73522f29800438c88aa8cb95aa37613-320319343-w0-6&sc_extcmp=JS_2163_home1&cbRecursionCnt=2&SiteId=cbmsnhp42163&ArticleID=2163>1=23000

The article highlights four main areas: communications skills, personal development, interacting with others and “all things boss-related.” Within each area, there are a handful of particular examples that require some level of competence in order to succeed in the work world (e.g., making small talk, listening skills, time management, participating in meetings, etc.)

It would be wonderful – and convenient – if there were a book to teach these things, but most of these particular skills seem to be acquired only with the passage of time. I am sure it’s harder for people with social communications disabilities to master them. But I am (supposedly) neuro-typical, and I still struggle with small talk, public speaking and interacting with others (especially anyone in a position of greater authority). At my advanced age, I frequently blurt out words that are not well considered beforehand.

In fact, my son might have an advantage; when he is unsure of an appropriate response, he is likely just to keep his mouth shut.

Bonding With Dad

We got through a weekend without speaking by phone. Last Saturday, my son left his phone in the car of one of the fellows he plays Frisbee with. Isn’t it funny how I’ve been writing about his difficulty with social connections for several months now, yet when he tells me he was in a car with one of the Frisbee guys, I wonder why. My son has made it pretty clear that some of these guys can party.

Turns out the practice last Saturday was downtown, and the players who had cars gave lifts back to campus to those who did not. Anyway, he had a fun day and didn’t seem particularly worried (more annoyed at the inconvenience) about not having the phone. The driver returned it yesterday afternoon.

Tonight is the start of his school’s basketball tournament. My son has attended quite a few of the games, once or twice with his father (who hails from Indiana – need I say more?!). Tonight, my husband is driving up to school to go to the game with my son. If the team wins, they will attend the next round, to be held in another suburb on Thursday. While I’m pretty sure there won’t be many students in attendance with parents, I’m not the least bit worried about that – there won’t be many students whose parents grew up in basketball country either!

Success Breeds Success

I’m sure many readers know the name John Elder Robison, an adult with Asperger’s who wrote the book, Look Me in the Eye, my life with Asperger’s. Mr. Robison’s website (www.johnrobison.com) and blog provide more useful sources of information, but a quote from it that I really like and believe is:

“To some extent, success breeds success. My first friends gave me confidence and allowed me to improve my social skills.”

This is not especially deep; I like it nonetheless. Our children never stop growing and developing skills. As my son has become involved with some peers at school, his confidence in other social situations is increasing. And my confidence in him is also strengthened.

What Keeps Me Awake at Night

On a website called www.nldontheweb.org, I found an article written by Dr. David Dinklage in 2001, describing Nonverbal Learning Disability and how it differs from Asperger’s Syndrome. Dr. Dinklage’s article was much more specific in terms of strengths and deficits in NLD. One point in particular hit home: “pragmatic use of language is impaired: weak grasp of inference, little content, disorganized narrative despite good vocabulary and grammar. Rote recall of a story may be good, but the main point missed.”

I have read enough of my son’s papers over the years to know that he has a firm grasp of grammar, sentence structure, spelling and vocabulary. Moreover, some of his writing has been very creative and really enjoyable to read. But I have also seen evidence of that disorganization, lack of complexity and the occasional missed main point; and I worry about whether he has the tools to succeed in Communications, which will be his new major.

Looking at the glass as half full, however (which my daughter frequently reminds me that I often fail to do – or choose not to do), I think journalism – print, Internet or other media – still might be a good choice: Who, What, When Where, Why, How…Just the facts, Ma’am.

NLD Deficits

In the same article I referenced yesterday, they also listed some of the challenges faced by children (adolescents, adults) with Nonverbal Learning Disorder. They experience difficulty with:

• Visual-spatial skills – sewing, anyone?

• Motor skills (poor balance and coordination, weak athletic abilities, messy handwriting) – except for the handwriting (see visual spatial above), my son was always an active, though not gifted, athlete who enjoyed sports. He played soccer, basketball and baseball with town recreation leagues and was respected by his teammates.

• Social skills (poor understanding of facial expressions, body language, tone of voice, personal space and relating) – no, this is not an innate skill for those with NLD, but yes – it can be learned. My son is probably still behind the eight ball for social maturity in some ways, but he has progressed light years. This growth has been especially striking since about midway through high school and has continued at a relative fast pace since then. I expect him to further develop this skill on his own schedule, as he has done pretty much everything.

NLD Strengths

In my recent browsing and link-following, I came across an article that itemized some of the strengths of a child (or adolescent or adult) that has been diagnosed with Nonverbal Learning Disorder. They include:

• Early speech, language, and vocabulary development – my son was a relatively late talker, but his speech was clear and his vocabulary has been excellent from an early age. As a result, he can make a strong first impression even though he might come across as shy and an “initial onset dysfluency” sometimes gets in the way.

• Strong memory – when he is focused (which is most of the time), he can remember details, facts and other bits of miscellaneous information that would be way beyond me. I think this is a strength that could actually compensate for some of the social difficulties. He would be the person to solve the argument over who pitched the third game of the ALCS in 2004. (Now you also have to realize that – if he were to read this – he would say “I don’t know who pitched that game.” He might miss the point by getting mired in the way I stated it!)

• Attention to detail – in kindergarten he was very clear that R2D2’s light did not blink in the first Star Wars episode and only started that in the second

• Strong reading and spelling skills, excellent verbal expression and good auditory retention – I believe these are the skills that he will eventually be able to capitalize on and forge a career on.

Adam, I See You

This turned out to be a family movie weekend. We all watched Adam, about the young man with Asperger’s Syndrome making his way in the world after his father’s death. It was very touching, and with a good deal of humor thrown in. Both my son and daughter laughed out loud at certain parts. While I saw some of my son in the title character, Adam clearly had bigger obstacles to overcome. My son seems more grounded than the title character and does not have the temper swings that Adam fought to control; but he is sometimes overwhelmed by activity and emotion, and might seek solitude for a brief period. Nor does my son obsess on any particular subject, a trait seen in many of those on the autism spectrum. On the other hand, there is a bit of Adam in him. For example, seeing someone struggling with a heavy or awkward load, he might not think to say “do you need a hand?” He is sometimes unsure of how much or how little to say about things that are personal, or that some people might consider private. The one toss of a coin was Adam’s comment that “interviews usually don’t go well.” Although he does not volunteer information, and sometimes struggles with the back-and-forth nature of conversation, my son can be very well spoken in some settings.

The other movie we saw together was the James Cameron epic, Avatar. We loved it, by the way. Without going into detail, it is the story of a human-like people on a distant planet trying to live their lives in peace, and in harmony with their nature. These people, the Na’vi, have a way of knowing each other and each creature intimately; and – when they achieve that intimate knowledge – they say “I see you.” This “I see you” is not only the look and appearance, but the knowledge of someone’s essence.

My son is very different than Adam; but Adam, I see you.

Another Valuable Website

When you start seeking help and information along the Internet Highway, there are many forks and turns to explore off the main road. I recently stumbled on a site called OASIS@MAAP (although the URL is www.aspergerssyndrome.org), which is a convergence of two organizations: Online Asperger’s Syndrome Information and Support and Susan Moreno’s MAAP organization. The site “provides articles, educational resources, links to local, national and international support groups, sources of professional help, lists of camps and schools, conference information, recommended reading, and moderated support message boards…[in] addition to the annual conference, newsletter email and phone support provided by MAAP Services."

The site is well worth looking at, especially for young adults with social communications or autism spectrum disorders and their parents.

Fostering (Unwanted?) Independence

As our children reach various ages and stages in their lives, they cross a border to independence that is like a ripple in the water. Each point brings them farther away from their core family. My daughter, nearly 13 years old and in 7th grade, walks alone or with friends to and from school, walks home from nearby friends’ houses by herself after dark, goes out for pizza or a soda with friends. On a sunny weekend, she might leave the house in the morning and not come home until dinner time. She can check in by cell phone, but that does not change the fact that she is considerably less supervised than she was only a year ago.

What we take for granted will be experienced by our neuro-typical children, must be viewed in another light for children with social communications issues. Because my son has always been a self-proclaimed “city kid,” I was not surprised that he took to public transportation so readily. Moreover, his weeks in rehabilitation after his illness when he was in eighth grade prepared him to take those steps outside on his own. But an AS or NLD teenager going “walkabout” on a weekend afternoon is not the same as a young AS or NLD adult preparing to live fully independently. The ripple is much farther away and there is a fear factor that must sometimes be overcome.

For the past few days, I have been on the sidelines of a passionate (electronic) dialog among parents of young adults with autism/Asperger’s Syndrome. Like I do, they encourage their children to step outside the box, sometimes literally, and to nurture their own independence. The issue was raised time and again that, in many cases, the child was not ready to do that. The fear is that the more independence they demonstrate, the more that will be expected of them; and they remain uncertain of their competence to succeed on their own.

So as we foster independence, it must be with the primary goal of fostering self-confidence. At every opportunity, I hope the adults in my son’s life – whether, teachers, other professionals or family – continue to remind him of all he has achieved and all that he still has it within himself to achieve in the future.

Easy Come, Easy Go

In the Fourth Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), Asperger’s Syndrome was added as a mental illness. In the ensuing years since, professionals have become frustrated trying to differentiate AS from autism. Hence, one of the recommendations released this week for the DSM-V (still a few years away from publication) is to fold Asperger’s into the autism spectrum.

The work group making recommendations on autism spectrum disorders is proposing that Asperger’s Syndrome be “subsumed into an existing disorder: Autistic Disorder (Autism Spectrum Disorder).”

An interesting point I’ve read is that some states now require insurance companies to cover services for autism, but not Asperger’s. So it may be a good thing to have AS reclassified. On the other hand, some “Aspies” are comfortable with the current designation, and may not want to be considered “autistic.”

In today’s NY Times, a father wrote of his Asperger’s-afflicted daughter, that she regards her autism as her strength. She credits it with her talent as an artist and singer, as well as her ability to relate to animals.

And once again, I stress that my son has Nonverbal Learning Disorder. The more I learn about this disability and my son’s abilities, the more confidence I have in him. It is building his self-confidence that I still worry about.

A Fine Line

I have been learning in the past few months that there is a fine line between advocating for your child and helping him advocate for himself, with a lot of gray areas in between.

Through some of the group emails, I am also much more aware of the gradient degrees of social communications disabilities. I’ve read of the sorrow of parents who have realized that their child will always struggle. I’ve read of the determination of other parents to ensure that their child will achieve all that she can, whatever that might mean.

I am acutely aware that, while my own son certainly will wrestle with his problems (as do all children and young adults), he is much more capable of self-advocacy than others. And I am grateful for that gift.

Dean's List

When I drove my son back to his dorm yesterday, there was a small sign taped to his door congratulating him on his strong grade point average. It’s a testament to how hard he works and how determined he is that he achieved a 3.0 GPA, despite the poor grade in Stage Tech.

I’ve mentioned that I get a lot of daily emails generated by AANE discussion threads; some I wish I had not gotten. For example, there are some with the theme, “my 26 year old barely leaves her room…getting a job does not seem a remote possibility.” Others talk about the substantial expense associated with some residential programs that have gotten mixed reviews. Just as each of our children has different capabilities, we parents all face different challenges in nurturing them and helping them succeed.

On most days (though not all) I believe that my son will grow into a successful adult, even though he might define success differently and we as parents might define it differently. For the time being, succeeding in his classes is a phenomenal achievement.

Dr. Temple Grandin

She is probably the most visible autistic person globally, and she is in the news again today as HBO is set to premiere her story, “Temple Grandin” (HBO, premieres Saturday, February 6). If you have a child on the autism spectrum or afflicted with a social communications disability, you probably have come across her name, even if you don’t know a lot about her. I am one of those parents. However, some quick research in the past few weeks as the movie’s buzz accelerated taught me enough about this woman to make me want to learn more.

The movie appears to have been well received in a critics’ preview: the NY Times critic, Alessandra Stanley, remarks that the film “honors its heroine’s priorities, stressing deeds over tearful setbacks and joyous breakthroughs.” In other words, look at what I did – but don’t look at it as a “breakthrough.”

On Dr. Grandin’s website (templegrandin.com), she notes "I have read enough to know that there are still many parents, and yes, professionals too, who believe that 'once autistic, always autistic.' This dictum has meant sad and sorry lives for many children diagnosed, as I was in early life, as autistic. To these people, it is incomprehensible that the characteristics of autism can be modified and controlled. However, I feel strongly that I am living proof that they can" (from Emergence: Labeled Autistic).

She has co-authored a book (with Sean Barron, also diagnosed as autistic) called Unwritten Rules of Social Relationships. The summary on the website testifies: “This enlightening and thought-provoking book by two of the leading minds in the field, who themselves have been diagnosed with autism, educates both those on the spectrum and their caregivers. Certain to become a classic, Temple and Sean lead you through their mistakes socially and ways they found to improve their lives.” Had I read this book sooner, I might not be writing here today! On the other hand, had I not started this blog, I might not have come across the book, which is now on my must-read list. My hope is that my son will also want to read it.

Temple Grandin is a tremendously inspiring figure for those affected by these disabilities – children and their parents, adolescents, adults… a paradigm for us all. Now would be a good time to learn more about her, to use her books to show us the road to what is possible.

Internet Security Notes - Financial

With my son off at school, armed with a credit card, it is probably as good a time as any to talk about some Internet security rules, especially as they pertain to online purchases.

When you establish an account in your own name, with a user login and a password, the computer will often offer a pop-up saying “Do you want to remember your password?” With the exception of our home computer that is only used by our family, I never let my computer auto complete logins or remember passwords. Each computer that can do that likely increases the odds of your account getting hacked. Even one is probably too many. Although many of us might do it, it is not a good idea to use the same password for every account you use, especially if that is a relatively short password.

My son now has a debit card for his own account, and a credit card (my account) for larger purchases – mainly books. We have already seen that there are times when he will need to order and pay for something online. Which to use? NEVER use a debit card for online purchases. It is much harder to dispute purchases made with a debit card, especially when the funds are withdrawn immediately from a checking account. I’ve read recently that gas stations are another place where you should use a credit card rather than a debit card because it is apparently very easy to clone your account from a gas pump. If you have to use a debit card, stick with one that has a credit card logo (Visa or MasterCard) and input the number as a credit card.

Even following the two maxims above, there is always a possibility that your account will be violated. It is a good habit to frequently check your bank accounts and credit card accounts online to keep an eye out for unusual activity.

I have encouraged my son to establish an online banking account, and to learn how to check his balance and transfer funds from his savings to his checking account. Besides the reassurance that no one has illegally accessed his accounts, monitoring the declining balance will be a good lesson for him in money management. Currently, he has no income to replace the balance; so I hope he understands that he’s got to watch it.

The Continuing Saga

After much thought, my son believes that the grade he received in Stage Tech did not reflect the effort and level of success he achieved in that class. Yesterday I sent an email to the director of disabilities at my son’s school letting her know that we are going to pursue the issue of the Stage Tech grade. Specifically, we want to know how the grade was arrived at and why he did not receive accommodations in the sewing segment (which he was told he failed).

I have not gotten a response as of this writing. There is a meeting by our local Special Ed Committee next week on transitioning to college with a learning disability. We hope to get further clarification on the issues at that meeting. After that, we will arrange a meeting at the school to discuss that grade and future accommodations that will bolster my son’s odds for success.

Axiomatic

There is an article on the Internet today by LifeScience.com that makes the case that children who can not read social cues and body language are more apt to be picked on or bullied by peers.

Any parent with a child with NLD or Asperger’s will not be surprised to read that; it is likely a frequent nightmare. But our children can learn skills that will help them first, make better sense of non-verbal cues; second, avoid some situations where misreading a cue might have considerable consequences; and third, understand and manage peer reaction to a social blunder. I am learning daily, now that he is away at college, that my son has learned over the years to interpret some body language by peers. I think that he does well enough in either deciphering or – when he is unsure how to unravel what the actions and/or facial expressions might be telling him – not reacting, that he usually avoids major missteps.

I think sometimes writing this blog allows me to better focus on the progress he has made, rather than how far he has to go.

It's All Relative

Part or our membership in AANE includes entrance into the Google group, “Parents of Adults with Asperger’s.” Since last week, I’ve been bombarded with emails, some relevant to my son’s situation, most not so relevant. The relevancy hinges on the degree to which the young adults are affected by their learning disability. It’s been heartbreaking to read how many of these young people are on anti-depressants or anti-anxiety medication; how very many of them find it difficult to face the social world they live in. It’s been heartening to realize that many are living relatively independently. Finding employment is clearly the biggest hurdle. However, I have to believe that – at least at this particular time – the weak economy (and concurrent 10% unemployment rate) is no small factor.

My son will always face challenges, but I am grateful that he appears to be coping better than most of the “Aspies” about whom parents have been writing. I have to say “appears to be…” because my son can not always talk about his feelings. I know that he is handling the academic load, and I know that he is active with the Frisbee group. I take solace from these two perceptible truths.