Category Archives: Education

To the Learning Centre, with love

For the past seven years we’ve sent our eldest son off to school every day and hoped for the best. Some mornings, we’ve held our breath and wondered if/when the call from the principal would come. Other times we’ve laughed with tears in our eyes at the things he’s accomplished easily – things that we thought would be hard, or even impossible.

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He is ready for middle school, but am I?

We’ve worked with new teachers every year and several new principals, but through it all the Learning Centre in our neighbourhood school has been a place of refuge, understanding, and true partnership.

Today is the last full day of school and I’m overcome with emotion at the thought of saying good-bye to the people who’ve helped my husband and I raise our son from a small boy into a young man. Our Learning Centre teacher has been a constant source of ideas and inspiration, our colleague and co-conspirator, a steady hand in the sometimes stormy seas of elementary school. Our son is ready for middle school because of her.

Like us, the Learning Centre has been there for our son every day. Like us, the teachers in that centre have asked a lot of him. They’ve expected him to try and try again. Like us, they’ve loved him, cheered for him, thrown their hands up in the air at times, and then used those same hands to hug him or cajole him or give him a mighty high five. In short, they’ve helped him begin life’s most important journey – the path to finding himself, his own truth, his own way, outside of our family.

How can I possibly recognize the gift that these teachers and educational program assistants (EPAs) have given to our family? My best friend smiled at me as I tried to find just the right thank you – a gift card just doesn’t seem to capture the enormity of the contribution they’ve made.

Before we even had a diagnosis the Learning Centre was there for helping our son adjust to the routines of school life, giving him a quiet place in the midst of the sensory and social overload. And they were there for us too, as we navigated new terrain.

Once we knew about the Asperger’s, we’d sit around the table during program planning meetings and compare notes. What successes were we seeing? How could we tackle the latest challenge? And always, at some point, we’d end up laughing and sharing the stories that made us smile. That’s the part that always brings tears to my eyes – the moment when a teacher, like a grandparent or cherished aunt, shares the same intimate appreciation of your child’s special gifts; when you marvel at the same small things that are almost invisible to others.

Don’t get me wrong. It hasn’t always been a picnic. We’ve all had our moments along the way. Times of intense worry (on my part) or times where the way forward hasn’t been clear. Or times when we’ve wondered if shrinking resources were going to make life more challenging for everyone.

But at the end of the day, the Learning Centre has been a tiny perfect microcosm of the community that I wish all our children could grow up in, a place that:

  • truly sees and celebrates the individual, without losing sight of the collective
  • has caring people who are there to help, but are equally intent on stepping back so kids can stand on their own
  • doesn’t feel sorry’ for our kids! They embrace their strengths and adapt for their weakneeses
  • admits there are at least ten ways to do every task  (especially if you visit the Dollar Store or use video)
  • recognizes that a joke is way more effective than a raised voice (I’m still learning this one)
  • is full of warm hearts and cool heads – a perfect combination when things get rocky

So as I look at pictures of my son’s Grade Six graduation, I know that behind every look of pride and joy and hard-won accomplishment stands the care and support of our Learning Centre staff. I’m not really ready to say good-bye to them, but I’ll never stop saying thank you.

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Filed under Celebrating Difference, Education, Family

The Kindness of Strangers: Part Two

After my first blog post about the kindness of strangers a funny thing happened: those kind strangers started coming out of the woodwork. Maybe it was because the story about prof from Carleton University moved me so much I felt compelled to write and thank him for seeing past the challenges that our kids can present. He responded right away and I was glad I had reached out to him.

That encouraged my husband to make good on his promise to write to the family-run business that manufactures the E-Z Bar, which helped Ryan learned to ride a bike this summer. The owner was incredibly touched by Ryan’s story and how his gizmo had prompted so many joyful tears!

Since then I think I’ve been awakened to the myriad of kindnesses around my family everyday. Ryan started taking an art course just days after my last post and when I shared my usual Asperger’s tip sheet with his instructor she wrote back right away with questions and ideas about how to make his experience more positive. Not only that, her assistant’s mom got in touch with me too to learn more too!

Soon after that, there was the neighbour who told me how Ryan’s great behaviour at a noisy basketball game blew her away – she didn’t know I’d been worrying about his relationship with his peers all night and how her casual comment helped me regain my perspective.

The skating badge of honour! Courtesy of Emma the amazing instructor.

Then I got to thinking about Ryan’s swimming instructor – who builds small towers with flutter boards for him to destroy when he reaches a goal.

Or his skating instructor who promptly showed up with a white board when I told her that giving Ryan a list of tasks to complete during lessons really kept him focused. I almost fell on the ground with gratitude when she showed up with that dollar store whiteboard with the happy faces drawn on it. Yesterday, Ryan got his second skating badge. If his instructor had seen him three years ago lying on the ice and refusing to get up she would have wept ‘happy tears’ as Ryan loves to say.

I’m writing these little gems down, so I can take them out at a later date and admire them all over again. They are a good reminder that there’s plenty of kindness out there, just waiting to be recognized and appreciated. Happy Valentines Day everyone!

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Filed under Celebrating Difference, Education, Sports and extracurricular activities

When learning new things is hard

If learning a new skill or trying something for the first time can evoke anxiety in an adult imagine what it can be like for an Aspergian kid who relies on routines and predictability to keep their world feeling safe and secure.

Before we knew Ryan had Asperger’s he used to scream when it was time to do his homework. He was five at the time and the ‘homework’ was cutting and pasting. The mere thought of picking up scissors, which challenged his fine motor skills, was enough to create a meltdown. Now, thanks to Jed Baker, I understand why.

Slow and steady really does win the race

I recently attended a conference, organized by the Autism Awareness Centre, that featured Dr. Baker. His advice was incredibly practical and we’re now planning to use some of his tips in our upcoming plan to teach Ryan to ride his bike without training wheels.

By the way, if you have kids who haven’t started riding a bike yet, I recommend starting with those bikes with no peddles since balance is the hardest part of riding a bike. That way you can skip the training wheels altogether! 

Here are a few of the tips we picked up from Jed and will be sharing with Ryan’s swimming and skating coaches as well.

  • Start with what’s easy, not hard. This is so basic, yet I often find myself jumping into the hard work right away, which triggers stress and anxiety. Now I will try to start with a task that Ryan is really good at, so he feels confident, and then work up to something more difficult.
  • Break it down into small pieces. For our bicycle plan, the first (and maybe the only) thing Ryan is going to start with is sitting on the seat. Then we’re going to ask him to go from point A to point B just using his feet.

I read about this approach in a wonderful memoir called Finding Benabout a mother and son struggling to make sense of their world long before the Asperger’s diagnosis was available to them. I think it took them months for Ben to start riding his bike, but he did it, in his own time and at his own pace.

  • Give choice of work & use special interests. If we have three activities on our list maybe Ryan can choose the two he wants to do and in what order. Options increase comfort levels and special interests (Super Mario!) can be a big help.
  • Use visual supports. White boards, diagrams, labels are all great for our visual learners. We use them to break down our activity into steps and show what the reward is at the end.

 A few weeks ago Ryan’s skating instructor showed up with his lesson plan written on a white board. I could have kissed her right then and there!

  • Reduce length. ‘Let’s try this for one minute and then we’ll do X.’ Keep the trying short and then move on to a preferred activity. Or take a break and then try again.
  • Reward trying. I loved this part of Jed’s presentation. He talked about how compliance isn’t a skill but trying something is a skill that we need to teach our kids. So he rewards trying, not just succeeding. He even suggested a reward system based on trying rather than achieving.

Let me know what techniques you use to teach ‘trying.’ I’d love to hear from you. 

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Filed under Education, Managing Anxiety, Sports and extracurricular activities

Navigating the minefield of extracurricular activities

I know we looked completely crazy to the parents sitting near us in the skating rink today. After all, how many parents laugh, hug and practically cry as they watch their child glide down the ice? But we knew how hard won this icy flight was for Ryan and we couldn’t help ourselves. It was a big deal and we knew it.

Finding activities that work – and knowing when to push your child and when to throw in the towel – is such an intricate dance with any child. Add Asperger’s Syndrome to the mix and it becomes a bit more complicated.

Ryan started skating lessons before his diagnosis and his initial reaction to lessons was one of the things that hinted that he may be on the spectrum. He hatde his uncertainty on the ice – and his fears scared the bejesus out of all the other little kids in the dressing room. Oh the cold hard stares we got those Saturday mornings.

Once we coaxed him onto the ice (talking about how he was Anakin Skywalker travelling across Hoth) he would lie down more than stand up and use his skate to repetitively take chunks out of the ice . We all felt horrible and at a loss. But we peservered, made some small gains, and then abandoned skating for a year.

Now we’re so much more prepared to meet Ryan’s needs. We know one-on-one instruction is definitely a must in his case. We also know that skating, bike riding and other activities are naturally going to take longer for Ryan because of the coordination/gross motor issues that often accompany AS.

And we prepare his instructors in advance. I recently met with the aquatics supervisor at the pool where he receives one-on-one instruction. My goal was to share a quick handout I created about Aspergers. He was surprisingly positive and open to the piece, so I’m reprinting it here, in case someone else finds it helpful.

Three Things You Need to Know about Asperger’s Syndrome

1. It’s neurological. That means Ryan’s brain is wired differently than ours and he experiences the world differently. The rules that most of us follow quite naturally don’t really make sense to him.

Listening. This is Ryan’s biggest challenge. The pool is a very overwhelming place for him. His brain is like a blackboard filled with sticky notes and they all look the same, so things that we block out (background noise, the shimmering water, the lights) all demand his attention at the same time.

  • What works: – Visual instructions. Showing rather than telling. Ryan’s very smart, but processing verbal instructions is difficult. Show him the list of what he needs to do to get his badge and check off the things he accomplishes.
  • What doesn’t: Don’t expect that saying Ryan’s name or calling to him will get his attention. I often touch his shoulder to ensure he connects with what I’m saying.

 2. Asperger’s makes the world a confusing place. Things that most of us learn, know and remember (like I’m safe in the water when my teacher is here or I can’t run on the pool deck) aren’t as easily accessed by kids with Asperger’s – that means we need to give them lots of reminders.

Staying on task. All Asperger’s kids resist change because it scares them. Ryan resists change, so learning new things can take a lot of time and patience.

  • What works: Make things a game. Ryan loves role playing The offer of doing something ‘fun’ after he tries a new thing works well too.
  • What doesn’t: Talking too much. Short instructions. Gentle encouragement. The promise of something fun after something hard, is much better than long negotiation.

 3. Ryan’s brain is an eccentric, but exciting place. He’s command of language and concepts is very advanced for his age. Don’t be surprised if he wants to talk forever about a computer game or if he uses very big words.

  • What works. I use Ryan’s love of language and information to keep him on task. Give him a word he doesn’t know or explain how something works and he’ll be listening with laser-like focus.
  • What doesn’t: If he would rather talk about computer games than do what you’re asking, use what he’s talking about to your advantage (i.e. It’s time for the Super Mario brothers to swim up to me…)

I have this in Word format. If you want a copy just let me know and I can send it your way.

I would love to know what sports/activities your kids like and why? And how do you prepare them and others?

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Filed under Education, Sports and extracurricular activities

Viewfinders festival features Aspie flick & panel

A friend told me this morning that Halifax’s Viewfinders International Film Festival for Youth is going to feature an animated film dealing with Asperger’s and a panel discussion after the flick.

Viewfinders Film Festival, April 12 - 16th, Halifax, NS

The film is called Mary & Max and features the voices of some of my favourite actors including Toni Collette and Philip Seymour Hoffman.

But before you go and buy a ticket – which I was just about to do – the film is really for older kids (12 and up). I checked out CommonSense Media to find out some of the themes/issues in the film and you may want to check that out before going. They give a great synopsis (major spoiler alert). I’m definitely going to see it, but Ryan will stay at home.

The event is part of the festival’s Family Day on Saturday, April 16 and takes place from 1 p.m. to 4 p.m. at Empire Theatres Dartmouth Crossing. At 4 p.m. the ‘Friends, Enemies and Asperger’s Syndrome Panel’ begins – also for ages 12 and over.

 If you take your child, or if you and/or your child have seen Mary & Max I would love to hear your thoughts on the film.

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Filed under ASD events, Education, Films & docs

Asperger’s and the art of conversation

The ebb and flow of conversation comes naturally to most of us. We take turns trading ideas, instinctively knowing when to talk and when to listen. The process seems so simple that it’s hard to believe there’s a list of unwritten rules that is often baffling to people with Asperger’s syndrome. For AS kids, learning the rules can be tough — but it can be done.

Last week, Cindy Wheeler, a speech pathologist based in Halifax offered our parent group some examples of how she helps children on the spectrum improve their conversational skills. She said some children have a tough time sticking with a topic, or their mind seems to inexorably drift to a preferred interest, leaving companions feeling frustrated and ignored.

Aspies often have 'special interests' which can hamper back and forth conversation

As well, some children miss social cues that indicate how the other person is feeling about the conversation. Wheeler offered the example of a little boy who is obsessed with Thomas the Tank Engine. His preoccupation with the character is so powerful that he rarely talks about anything else, even when prompted to change the subject.

“He just doesn’t see that this is an issue,” said Wheeler, adding that he didn’t flinch when she yawned and looked away during one of his monologues about the little blue train. The first step in changing this pattern was to decide what would motivate the boy to learn the art of conversation.

“Motivators are very important,” said Wheeler, adding that most kids on the spectrum seem reluctant to take part in skills training unless they are working toward a goal.

In the little boy’s case, the motivator was obvious: Thomas. Wheeler explained to the boy that if he worked hard at talking about things other than Thomas, he would be rewarded with some kind of Thomas treat. With the incentive in place, she started with simple word association. Wheeler would say a word and the boy would say a word, trying his best to steer clear of Thomas. The idea was to reinforce the need for turn-taking in dialogue.

Visual cues were also used to keep the boy on track, including a small, toy pig. Whenever the boy would start dominating the conversation, the pig was placed on the table — a signal that he was hogging the conversation. At one point, the sudden appearance of the toy surprised the boy. He stopped what he was saying and announced: “I’m hogging the conversation!” It was a small breakthrough on the long and sometimes confusing road to better communication.

Other visual cues include cue cards with pictures. “It needs to be scripted and overt,” said Wheeler, noting that when Thomas crept into the conversation, she had to raise her hand and tell him, “Stop.” Another tool at her disposal: field work. Parents are often prompted to ask their children to pose a question to a friend at school, then report back at the end of the day.

Some recommended reading: “Teach Me Language: A language manual for children with autism, Asperger’s syndrome and related developmental disorders,” by Sabrina Freeman, and “Spotlight on Social Skills” series.

Special thanks to Cindy Wheeler for taking the time to meet with our group.

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Filed under Building social skills, Education

Will Nova Scotia’s government act on Autism Advisory Team’s recommendations?

If I were a member of Nova Scotia’s NDP government my New Year’s resolution would be focused on finding a way to define this government’s vision beyond the borders of budgetary restraint.

And taking a second look at at least some of the 53 recommendations put forward by the Nova Scotia Autism Management Advisory Team might be a good place to start.

The government has been struggling to find its centre (no pun intended) since its landmark election and has unfortunately ended up leaving others to define its time in office. I’m not a numbers person, but I wonder how many of the team’s recommendations (below) could be implemented by re-allocating or making better use of existing resources?

The sad reality is that the government is so focused on keeping the province from sinking deeper into debt that it may miss an opportunity to take a stand on autism services. The current conversation about our provincial education budget  and the deep cuts planned there mean this report could be shelved without a fair hearing. Already there’s talk of the report being ‘put on hold’ for several years until the budget crisis has passed.

What do our kids do until then?

Before Christmas I met yet another incredible mom who is building something from nothing after watching her son fall into that post-public school gap. With next-to-no services available for her son, she watched him sitting at home day after day with only a care worker (paid for out of her pocket, of course) for company.

How many Moms and Dads are creating ‘something from nothing’ for their kids and what would it take for the government to a) recognize their efforts b) see what can be done to support/grow them c) bring them around a table to see what kind of meaningful progress can be made in a time of restraint.

Households don’t stop running when times are tough. Governments can’t either.

Is there a chance to make a statement about the government’s vision for people with ASD living in Nova Scotia and then take a conservative approach to implementing that vision?

To view the full report, visit the Nova Scotia Department of Education’s website or click on this link: http://www.ednet.ns.ca/pdfdocs/autism_mgmt/Autism%20Management%20Advisory%20Team%20Report.pdf
 

Recommendations Summary

(taken directly from AMAT Report)

1. An Implementation Committee should be struck by September 1, 2010, made up of members from the autism community and representatives from the departments of Health, Community Services, Education, Justice, and others when warranted.

2. Regional autism centres should be located and coordinate services in key areas of the province. These would be built upon already existing infrastructure and would enhance services already available. They would include a lending library and resources for families and parents. A navigator or case manager, who can offer the information and access to required services, would be available. This will offer seamless and “wraparound” services from childhood into adulthood within an inclusive system.

3. People with ASD should have regular health assessments that include gathering information on areas including but not limited to behavioural, emotional, and mental health issues; screening for medical conditions; nutritional issues; and motor, sensory, and perceptual difficulties. (These services would be offered through the regional autism centres.)

4. People with ASD and their families should have access to a wide range of health professionals/interdisciplinary health teams (e.g., psychiatrist, psychologist, social worker, occupational therapist, speech‑language pathologist, behaviour analyst, behaviour interventionist, and related professionals based on family and individual needs.

5. The province should designate the positions of behavioural analysts and interventionists as job descriptions within the Department of Health and make these trained staff available across the province to support families and individuals.

6. All general practitioners should become knowledgable in recognizing the features of autism. The Physician Toolkit (see www.autismcentral.ca/research/index.php?option=com_content&task=view&id=67&Itemid=70

to download a copy), a manual for medical doctors, should be available to all general practitioners across Nova Scotia.

7. Treatment/support plans should be comprehensive and include behavioural needs, educational interventions, psychosocial treatments, physical health needs, communication needs, environment, functional development, and skills for independent living.

8. Further explorations of crisis services for families and individuals with ASD should be investigated to determine if supports are appropriate, timely, and accessible.

9. A course on autism should be included as a mandatory part of training for all student medical professionals, including physicians, nurses, dentists, speech-language pathologists, occupational therapists, psychiatrists, and psychologists.

10. An autism training module should be developed and offered as a Continuing Medical Education (CME) credit to practising medical professionals and for the Mental Health First Aid program.

11. An ASD Clinical Practice Guideline should be developed that addresses the needs across the lifespan. (A possible model to consider is the New Zealand Autism Spectrum Disorder Guideline; see www.moh.govt.nz/moh.nsf/indexmh/nz-asd-guideline-apr08?Open.)

12. An autism education and awareness campaign should be developed and carried out. It should target employers, the justice system, general practitioners, health care workers, educators, and the community at large. The Department of Health should take the lead.

13. Initial screening of ASD for all infants should take place at the 12-month, 18-month, and 24-month medical examination. Surveillance for ASD characteristics should be ongoing past 24 months.

14. If an ASD is suspected by the health-care provider, the child should be referred immediately for ASD screening and comprehensive medical testing should take place within one month. Diagnostic reports should be shared with the family in a timely manner.

15. Following an ASD diagnosis, treatment/intervention should start within three months.

16. Additional clinical psychologists with the appropriate training should be hired to shorten the diagnostic wait lists for school-aged children.

17. Further investigation should take place on identifying and standardizing a best practice assessment tool to diagnose adults with ASD, as well as training of related professionals to administer it.

18. Funding to the EIBI program should be increased so it can be made available to all families with a preschool‑aged child diagnosed with ASD in the province of Nova Scotia.

19. Increased appropriate training opportunities should be made available to staff at daycares and early interventionists throughout the province.

20. A treatment plan should be created by the IFSP planning team and should include appropriate intensive intervention at the rate of 25 hours per week by ASD professionals.7 Services in French should be made available if needed.

21. The Department of Education should give all school boards targeted grants to support professional development and board-based initiatives in the area of autism. Grants should be increased and reviewed annually. Furthermore these grants should be increased to reflect the increased numbers of children in the public school system diagnosed with ASD.

22. The Department of Education should continue to fund the position of Autism Consultant for the province of Nova Scotia. This position would manage the autism strategy and provide the leadership in coordinating the professional development needs identified by school boards across the province.

23. All school boards in Nova Scotia should make sure that an autism specialist or consultant is a part of the staffing allocation to support the training needs and program planning teams in schools.

24. The staffing ratio for speech-language pathologists should be improved to offer additional staffing to all school boards. Occupational therapy should be available within regional school boards to help schools with the sensory needs of students with ASD.

25. The Department of Education should give targeted funding to each regional school board to support the position of Transition Facilitator. This position would work collaboratively with high schools, government departments, and community organizations to support successful transition out of public school.

26. An ongoing professional development focus on best practices in the area of autism education should be provided for all staff (including administrators, public school teachers and TAs, bus drivers, and staff at private schools) involved in the education of children with autism spectrum disorder.

27. School boards should be allotted targeted funding to be used for purchasing materials to support the programming needs of the children with autism spectrum disorder.

28. Nova Scotia’s colleges and universities should commit to offer post-secondary programming for students graduating from public schools with credits designated as IPP. Creation of additional seats in programs for students with IPPs is also recommended.

29. The Department of Education should make sure that each university in Nova Scotia offering an education degree offers a mandatory course in autism spectrum disorders to all students enrolled in education.

30. One university in Nova Scotia should become a leader in autism education. It should offer diplomas or degrees with specialization in autism similar to those offered in other provinces across Canada.

31. Staff at universities and community colleges should have opportunities for training in the area of ASD.

32. Criteria for the Department of Community Services’ Direct Family Support program should be reconsidered.  Specifically, the definition of “intellectual” disability and income testing as a basis for eligibility should be reviewed. Eligibility for this program should be based on the needs of the family and individual circumstances, making sure that families who could benefit the most from respite services are receiving funding.

33. A training toolkit for recruiting and retaining respite care workers in working with people with ASD should be developed. A list of required core competencies and experience for respite care workers to offer quality services to persons with ASD across the lifespan should be defined as part of the toolkit. Where regional respite programs exist, training should be given to respite workers specific to ASD.

34. Appropriate, community-based housing options should be available to all adults with ASD based on the needs and ability of the individual seeking support.

35. Appropriate, inclusive leisure/recreation programming specific to after-school and school breaks (Christmas break, March break, and summer vacation) for all age groups across the province should be developed and carried out.

36. Opportunities should be created for recreational/leisure programming for individuals with ASD 21 years and older.

37. A granting system should be created to meet the social and leisure programming needs of various autism organizations.

38. Targeted funding should be offered for recreation departments throughout the province to support recreation/leisure programs specifically designed for individuals with autism.

39. Training for parents and families should be developed and made available to help families to understand autism and their child. Effective training can be offered through the regional autism centres by improving access for families. Qualified professionals in various fields will be available to consult with families about challenging issues as they occur. This can be in the form of home visits, centre visits, email, and workshops to develop parenting skills in key strategies such as visual schedules, behaviour modification (functional analysis), and daily living skills.

40. Parents should receive funding to attend learning opportunities when they are offered in the province. Funds would be available through an application process.

41. Counselling services should be available to families who may be at risk of stress as a result of a diagnosis of autism.

42. A comprehensive employment model for people with ASD should be developed and carried out across the province. This model would include educating employers about issues and strengths of people with ASD in the workplace. This model could be delivered within cross-disability, established employment programs throughout the province, specifically in rural areas. Organizations and groups with ASD expertise, like the Provincial Autism Centre, could lead and develop the model.

43. Diversity training in the workplace should include ASD training.

44. Educational workshops and support groups, based on best practice approaches, should be developed for adults with ASD that focus on self-care, social skills, mental health, sexuality, and sensory issues.

45. Life skills training programs should be developed and carried out with a focus on budgeting, transportation, safety in the community, pre-employment skills, and wellness.

46. An increase in vocational and day program options should become available in rural and urban areas of the province.

47. The Department of Justice should strike a committee that will examine this safety need and develop a standard protocol for all first responders, police, fire fighters, paramedics, etc. to be used when involved with a person with autism.

48. First responders (911 operators, EHS personnel, fire fighter, search and rescue, and police) throughout Nova Scotia should receive autism education by trained professionals in dealing with emergencies and persons with autism.

49. An autism census should be conducted in the province to accurately account for all persons with autism spectrum disorder.

50. Nova Scotia should develop and carryout a voluntary autism registry directly fixed to the 911 system.

51. A provincial monitoring system for people with ASD who are at risk of wandering off should be explored.

52. The implementation team for the AMAT report should consider existing best practice models for programs and support currently being delivered by non-profit autism organizations throughout the province.

53. Autism organizations/groups should be included in the comprehensive service model proposed by the recommendation of the regional autism centres.

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Filed under Education, Public policy

Asperger’s 101

We belong to a relatively new network of parents, all of whom have kids with Asperger’s or similar challenges, and I was just recently saying how the playground can feel like the 7th ring of hell as I watch our beloved boy doing some very confusing (read: Aspergian things).

The parents talked about the balance between obligation I feel to be educating others about Asperger’s and Ryan’s right to privacy. At this stage, I’m erring on the side of education, because from what I’ve heard from other parents, eventually kids can clam up about their diagnosis as fitting in becomes more and more important to them.

There are lots of great resources out there to explain Asperger’s to family and friends. The OASIS website is a treasure trove of info from a basic “What is Asperger’s fact sheet” to a letter for grandparents (that is a little too long, but filled with good info).

When we first researched Asperger’s what we read didn’t sound like Ryan at all. It was all too vague or too clinical. Here’s what we’ve learned about Asperger’s so far (and we welcome corrections, additions and general comments!):

1. It’s about the brain, not about behaviour. As we tell Ryan ‘Your brain is wired differently. It makes some things easier (like reading) and some things harder (like managing ‘big’ feelings). AS kids see the world through a different lens and we have to constantly remind ourselves of that.

2. Not every Aspergian is obsessed with cars or trains. Yes, kids with AS tend to have special interests, but Ryan’s interests actually change regularly, with the exception of reading, which is constant. What is distinctive about AS kids is that their special interests tend to be all encompassing, so they will often lecture others about their passions with little regard for the reciprocal nature of conversations. Their voices may also sound wooden or flat.

3. Little professor syndrome: “Daddy, do you hold me in lower esteem than my brother?” Ryan’s highly advanced use of language is extremely entertaining (and occasionally embarassing) and is somewhat typical of AS kids.

4. Completely misses the hidden curriculum.  This is where things start to get difficult for the kid with AS . While they might be able to read and even respond to questions, they often ‘don’t get’ the unwritten rules that are part of everyday functioning in our ‘neurotypical’ world:

  • reading facial expressions (they look bored by all my talk about spies…)
  • unspoken rules (you don’t tell the teacher ‘you shouldn’t yell at him’)
  • appropriate and inappropriate language (you can talk about poo with your friends but not the principal)

In short, AS kids really ‘don’t get it’ because their brains function completely differently than ours. I’ve heard of a number of AS young people and adults who take acting classes to ‘learn’ how to respond to particular situations.

5. Difficulty understanding the emotions of others.  AS kids often have a neurological roadblock that keeps them from understanding or predicting the behaviour of others. They sometimes can’t see the connection between their actions and how they impact others and they can have difficulty seperating fact from fiction (Ryan lost something at school this week and immediately assumed someone stole it from him, even though he had lost it.)

6. Accessing information from one situation and applying it to another. Most kids learn something a few times and then can access that experience and apply it to different situations. An AS mind is a busy and confusing place, so although kids may be able to recite the correct response to a difficult situation, they can’t necessarily access that knowledge when they need it.

7. Visual trumps verbal. Although Ryan’s verbal skills were very advanced at a young age, his ability to process verbal requests is quite limited. Written instruction works best because of his highly visual mind. I really liked the way the HBO movie about Temple Grandin illustrated this phenomenon. This is a real challenge for me as a parent, since I’m a big talker and all that does is add noise and confusion to any situation.

8. Sound, smell and sight sensitivities. Someone once described an Aspergian brain as a blackboard covered with hundreds of similar yellow sticky notes. They all look the same and are overwhelming because no one note stands out. That’s the sensory overload experienced by some AS kids – the white noise at the pool can be overwhelming, or a seemingly mild smell like cucumber, even the hum of the fluorescent lights at school can be difficult.

9. Social interaction can be hard. Impaired socialization is a hallmark of Autism Spectrum Disorders, so although an AS kid may want to interact (and many do!) they don’t know how to enter a conversation or ask to join a group of kids.

10. “…Some argue that persons with AS are under constant or near-constant stress.” This was one of the hardest sentences I ever read about AS. The world can be an extremely confusing and unpredictable place for Aspies. One online resource is called Wrong Planet and I think that just about says it all.

The last thing I should say is that the Autism Spectrum is incredibly broad, so some of the issues above won’t affect all kids with AS. Each kid is different. That was one of the challenges with diagnosing Ryan originally – he didn’t fit the mold in some ways, but he did in others.  

What would you tell others about Asperger’s? What resources have you used to explain it to friends and family members?

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