New York City ‘Detective’ Program a Hit With Kids With Autism

If you’re planning a trip to New York City, be sure to add a stop at the New York Transit Museum in Brooklyn to your itinerary. The museum, open since 1976, has exhibits and collections featuring all things to do with public transit in the Big Apple, including the evolution of the subway system, part of a city bus where visitors can take the wheel, and a scale-model collection of trolleys and work cars. It is located in a former subway station.

For the last five years, the Transit Museum has also had a “Subway Sleuths” program for children in grades 2-5 on the autism spectrum. In 2016, the innovative program won a National Arts and Humanities Youth Program Award.

Meant more for locals, Subway Sleuths is an after-school program that “uses a shared interest in trains among kids on the autism spectrum as a means to encourage peer-to-peer interaction and develop social skills and confidence through goal-oriented sessions,” according to the museum’s website. Participants work in pairs and collaboratively in groups to solve mysteries in the museum’s subway station exhibit, using clues and walkie-talkies.

According to Regina Asborno, deputy director of the museum, “It’s all about taking turns and communicating, but we layer it all around transportation, which is something they love.”

Space in this program is limited to 36 children, and all candidates go through a screening process. “Semesters” run in both the spring and fall, and scholarships are available. Parents of past participants attest to the social skills that their children gained, as well as new friendships and increased confidence in communicating. All sessions are run by a Transit Museum educator, as well as a special education teacher and a speech-language pathologist who have been trained in ASD support.

In addition to the Subway Sleuths program, people with ASD are also attracted to other features of the transit museum, including the interactive exhibits.

“You have a track and a train and you have a schedule and you have times and places and it’s visual and you can see it and you can experience it. And it’s knowable. It’s not a lot of change. And that’s calming and very comforting,” explains autism specialist, Susan Brennan.

Recently, representatives from 60 cultural institutions came to learn about ways to use the exhibits at their own museums to attract and engage the autism community. We look forward to the spread of autism-friendly programs and exhibits to museums around the world.

When Autism Fidget Toys Become the Latest Craze

“Mum, it’s like everyone wants to be autistic like me now!” My 8-year-old daughter announced this as she came out of school on Monday. 

She was referring to the latest “craze” for the fidget spinner in her school (and it seems every other school in the country). Suddenly it was “cool” to want to fidget, and if you didn’t have the must-have fidget toy, you were somehow the odd one out.

It did somewhat amuse me to think that after an entire month of autism awareness, all it actually took to make autism “cool” was a little handheld plastic and metal spinner! 

Does having this fidget toy, which is marketed and made for those with autism and ADHD, become a huge international craze benefit those with autism or not?

It certainly seems to have made my daughter less stressed and self-conscious about her need to “stim” at school. Previously, it was rather obvious in her mainstream classroom which children had autism or ADHD, as they had access to special cushions, stress balls and tangle toys to help them concentrate or remain calm. While others were shouted at for fidgeting, a select few were allowed to “play” with these items at the teacher’s discretion. Having a fidget toy was something only children with a diagnosed condition were supposed to want or need.

Suddenly, all that has changed. 

While this has the advantage of making children with autism feel more included and less isolated, perhaps even “cool,” it has some negative effects, too.

How do you decide which children just want a fidget toy and which children really need it? Should schools allow all children the opportunity to fidget and “play” in order to enhance concentration and productivity, or are fidget toys actually a huge distraction in the classroom setting?

In the U.K. and the U.S., a large number of schools have now placed bans on the latest craze of fidget spinners, claiming they cause problems in the classroom and are a health and safety risk. This is not the first craze schools have banned, of course, but this is perhaps the first time such an overarching ban has actually had such a negative impact on autistic students. After all, the manufacturers never set out for the toy to be used so casually by so many people, and it was, in fact, designed as a stress release for the autism/ADHD market. 

My daughter would be devastated if her school introduced a similar ban. For her, the fidget spinner is not a must-have craze to be like her friends, but more a stress release from the demands placed upon her during her school day—much the same as she uses a stress ball or her twist-and-lock blocks. When schools decide to ban sensory and fidget toys, they risk isolating the very children they’ve spent years trying to include. 

I am loving seeing my daughter play together with children in her class with a toy she is confident in and comfortable with. It is rare for a craze to include her, as she is usually socially unaware of what others are doing. To see her included of her own doing is beautiful. I love that the world is now seeing sensory and fidget play as “normal” and not something to be mocked or frowned upon. I love that the current “in thing” is now readily available in shops everywhere and very inexpensive. It requires no language and little skill, so everyone can join in. 

But I worry too. I worry that schools are quick to react and ban everyone from using fidget spinners just because they are so popular. I worry that when everyone else moves on, my daughter will be the one left standing alone, still spinning her little handheld plastic spinner by the school gate and once again ignored by her peers. I worry that people will see her as just “playing” like everyone else and forget that, for some, these fidget items are a necessary stress release and stim. 

Time will tell how long this latest trend lasts. For now, though, I can see my daughter’s point. It really is like everyone suddenly wants to be autistic. I am watching with interest in the hope this has a positive impact for awareness and acceptance of not just my daughter, but the rest of the autistic population too. 

How I Transition My Son Back to School After Holidays

As a mum of seven, I have many years of experience with the back-to-school thing. New shoes, earlier bedtime and alarm call, packed lunches and hunting down the PE kit. But that was before we had a child diagnosed with ASD.

Towards the end of term, my boy was getting more and more distressed with every day of school. I was having to become more and more imaginative with ways to coax him off the floor, to eat and get ready for school, to get out of the door, along the road, into the playground and finally into the classroom.

It was exhausting and upsetting even without the scornful/pitying/bewildered looks from other parents.

I am lucky in that I get a good level of support from my son’s school, but even so I breathed a sigh of relief when the Easter holidays finally arrived and I could take a day off from that particular nightmare.

I wondered if the lack of school routine would prove difficult, but once I had decided that on the whole, dressing in day clothes could be optional, he soon settled into his own routine. It made it much easier for him to tolerate any plans we had as a family.

The end of the holidays were looming – they are always over far too soon. I realised to make transition easier for him, I was going to have to start preparing him to go back to school.

We started in the same way we prepare our neurotypical children: Being more aware of the bedtime routine, bringing meals back to more “school hours” friendly times. Sorting out uniform, shoes and PE kits. (I swear someone steals them and hides them during the holidays!)

I decided it might be good to talk about what was going to happen with my boy – he likes to know what the plan is.

Firstly though, I talked about what we had done through the holidays. We chatted about what he had enjoyed most and why. He was relaxed and happy remembering all the fun he had had. Then I suggested he could tell his classmates and teacher about his favourite thing – we talked about how he could bring it up and what he might say. We discussed taking a shell he found at the beach in to show people.

He will spend all of his time alone if left to his own devices, so I thought this was a good way of giving him tools for the cloakroom/playground socialisation he often struggles with.

I allowed him to choose his favourite underwear for the following day at school, and put his favourite comfort foods in his lunchbox – OK, so it was a bit beige, but I knew he would eat it and be happy to see his faves in there rather than be challenged by unfamiliar or less-tolerated foods.

I talked to him about what he might do during the school day. I then chatted about what he might like to do after the school day had ended, which he enjoyed.

When it came to crunch time, he still fell to the floor and went into his panic mode so, yes, I confess, I bribed motivated him. I showed him three tiny chocolate mini-eggs and promised if he walked nicely to school with me, he could eat them in the playground. I promised my neurotypical daughter she could have some when she got home – luckily, she’s very understanding of her brother’s different needs.

This did the trick and he went into the classroom with no further stress.

The next day, he was more settled. Although he was initially reluctant to leave the house, he responded to our more usual chocolate-free motivational efforts – timing, playing verbal and spotting games, and planning future events that he loves to do.

I am lucky – my boy is verbal and bright, but still the school run can descend rapidly into an emotional car crash without planning and careful management. I’m always looking for new ways to make life easier, for him and for the rest of us at that busy time of day.

Autism Training: ‘Just Watch the Big Bang Theory!’

Image courtesy of Flickr Creative Commons

‘School staff member told ‘watch Big Bang Theory’ as Asperger’s training’ was the title of a news report published by BBC Scotland on 1 March 2017. Here’s the link to the article.

For those of you unfamiliar with The Big Bang Theory, it’s a sitcom following the lives of four young American scientists who share a flat. One of the characters, Sheldon Cooper, displays some characteristics associated with Asperger’s syndrome; however, the creators of the sitcom deny that they have based his character on someone with the condition. I don’t watch The Big Bang Theory regularly, but have seen enough episodes to appreciate why it is so popular. My kids love it.

I had a chat with my son, Edward, about the news report and asked him for his thoughts.

He thought that Sheldon represents just one person who exhibits only some of the common features of autism including:

  1. Literal interpretation of language.
  2. Preference for fixed routines.
  3. Difficulty showing empathy.
  4. Difficulty understanding sarcasm.
  5. Formal use of language in informal situations.

Edward surmised that by watching The Big Bang Theory, a teacher might glean some tips on how to communicate with Sheldon Cooper or someone who is extremely similar to him.

However, here’s the issue. Autism does not present the same way in different individuals. Not all autistic people will have the same challenges with communication that Sheldon has. Some people with autism will experience additional challenges with sensory processing, physical coordination, executive functioning, motivation, organization, and speech and language. Many kids with autism experience high levels of anxiety and have meltdowns.

Knowing how to manage a child with autism requires a lot more training than watching a few Big Bang Theory episodes.

Being taught by staff who understand about autism and who differentiate the curriculum (and often, more importantly, the rest of the school day) to accommodate the needs of an autistic pupil can make the difference between a thriving, learning-contented child and a school refuser or an excluded pupil.

The recently published GL assessment, Hooked on Labels Not Need  found that a large majority of teachers (57%) thought there was a misdiagnosis of SEND (special education needs and disabilities), with only a quarter (26%) disagreeing.

On face value these figures are very concerning. However, I think a more detailed breakdown of the responses is required. The wording of the questionnaire may have skewed responses; teachers would only have to have come across one child who they believed had a misdiagnosis of SEND to agree that there was currently a misdiagnosis of special educational needs amongst children. There was no breakdown of teacher’s views regarding specific types of SEND diagnoses.

Do teachers think that autism is regularly misdiagnosed? Or were they referring to other conditions? We can’t tell from this report – it’s not clear.  There have been a lot of detailed responses from parent bloggers to this report. Some provide anecdotal evidence about the need for a label to get support. Others make the point that there should be a recognised process to follow when educational staff dispute a diagnosis given by medical or allied health professionals. Some write about the difficulties they have faced when school staff dismissed their child’s needs. Many of these posts are available to read here.

The BBC report indicated that education about SEND for trainee teachers decreased over recent years, as did post-qualification SEND training. Ambitious about Autism reports that 60% of teachers in England do not feel that they have had adequate training to teach children with autism. Schools, faced with financial constraints, often send just one member of staff to training sessions, with the idea that this person will cascade their new learning to their colleagues upon their return. No matter how well a staff member is able to summarise what they have learned on a full-day course, I think it’s questionable to expect that they can adequately condense and convey the training they have received to their colleagues, presumably in a 10-minute slot during a packed staff briefing.

Pupils with autism are more likely to experience social isolation and bullying. They also have a higher rate of informal and formal exclusions from school. Only 15% of adults with autism are employed. This suggests that all is not as it should be and that pupils with ASD need more support throughout school and beyond.

In my opinion, a good autism training for school staff needs to include the following (this is not an exhaustive list nor is it in any particular order):

  1. An overview about autism and how it can present differently in different pupils.
  2. Practical steps that staff members can make to change their communication style so that breakdowns in communication are less likely to happen.
  3. The importance of working with and communicating well with parents.
  4. Ideas for motivation and ways of rewarding pupils with autism to help them stay engaged.
  5. Awareness about sensory processing difficulties, as so many meltdowns and behavioural challenges are a direct result of too much stimulation. This should include practical steps to reduce sensory overload and understanding about stims.
  6. Strategies for dealing with a child in meltdown.
  7. Methods to de-escalate anxiety levels.
  8. Training on how to help ASD children learn to regulate their behaviours.
  9. Awareness of what parents of ASD kids are dealing with at home and finding out what strategies work there.
  10. Working with children with poor executive function who need structured help with organisation and initiation.
  11. Understanding why routines are important, and minimising the negative consequences when routines have to change.
  12. Understanding about commonly associated conditions such as ADHD and dyspraxia.
  13. Strategies for teaching good social and conversational skills.

Parents of newly diagnosed children, teachers, teaching assistants, grandparents, youth workers and adults who have recently been diagnosed would all potentially benefit from autism training so that they have a chance to learn and understand more about autism. It’s only with this understanding that you start to make positive changes to your communication, routines and environment, causing life to work better and flow more smoothly for everyone.

The original version of this post first appeared here.

Elementary Teacher Creates Sensory Chair for Students

The Raymond Ellis Elementary School in Round Lake, Illinois, recently made waves on Facebook when it posted a photo of one of its teachers with the “sensory chair” that she had created. Miss Maplethorpe teaches in the school’s Speech and Language Department, and she used tennis balls and cloth to create a chair for some of her students with sensory issues. As the school stated in its post:

Sensory seating is used for students who may have difficulty processing information from their senses and from the world around them. Tennis balls on the seat and backrest provide an alternative texture to improve sensory regulation. Students with autism spectrum disorder, Down syndrome, sensory processing disorder, etc. may benefit from this seating option.

Notice the school’s use of the word, “may.” As many people on Facebook were quick to point out, this chair looks uncomfortable. However, those experienced with sensory conditions disagree, explaining that some people find “typical” chairs extremely hard to sit in because they require more sensory input than just a flat surface. Sensory seekers often get comfort from objects that those without sensory conditions don’t understand at all — i.e., objects such as rocks and Legos.

As we all know, every person is different, and this chair may be too stimulating for some, while not stimulating enough for others. For more information, please see the post:

Miss Maplethorpe, from our Speech and Language Department created these chairs for our students that have sensory…

Posted by Raymond Ellis Elementary School on Thursday, January 26, 2017

Teaching the Art of Conversation

Arthur was a single middle-aged man who had lived alone since the death of his mother. His greatest love in life was trains and he knew absolutely everything about them. If you ever bumped into Arthur, he would start talking about trains whether you wanted to or not.

Unbeknownst to Arthur, he was unwittingly boring people to death. Some avoided him because they couldn’t cope with having train facts downloaded to them. Some became silently frustrated as he stubbornly refused to pick up on subtle hints that they were not interested. Others tried to be more direct by saying, “Arthur stop talking to me about trains.” But even this approach was rarely successful, as his love of trains was so great he couldn’t contain himself.

We lost touch with Arthur a long time ago, but I now realise that he was probably autistic.

When he was younger, our son Edward used to interact in a similar way to Arthur; although, thankfully for us, he was interested in quite a few different topics. Conversation with Edward was pretty much a one-sided information download rather than a conventional two-way exchange.

Once I observed him and his friend Ned playing a game where Ned said the name of an animal and then poked Edwards’s shoulder (which was the imaginary computer button), and Edward proceeded to give a random fact about the named animal in a robotic voice. They played the game for a good hour with Ned trying to catch Edward out with more obscure animals; both had a lot of fun.

This type of interaction, though, is hardly fit for purpose when it comes to making and keeping friends, especially once you hit the teenage years. I realised that Edward was going to have to up his game and learn some subtle but important conversational rules to help him get on in life.

We started tackling the “art of conversation” training when he started high school. We spent a lot of time, over many years, talking about the things people do if they are interested in what you are saying:

  • They look at you.
  • They lean towards you very slightly.
  • They make little sounds to let you know they are listening (mmm, yeah, uh huh).
  • They nod their heads if they agree with you.

Non-verbal forms of communication can be very hard to notice if you have autism, but if you are made aware of these communication signals you can look out for them and learn to understand what they mean.

We also taught Edward to make a statement about a topic he wanted to talk about and pause (count to five silently). We told him that if the other person was interested in his chosen topic, they would ask him a question about it. We explained that he could answer the question but only with one or two sentences. Then he had to stop and wait to see if the person wanted to carry on talking by asking another question or making a comment about the topic, which was their way of signalling that they were still interested.

We found it helpful to give Edward a set of descriptions of what polite people might do if they are getting bored, which included:

  • Glancing at the clock, phone, or other people a lot.
  • Fidgeting more.
  • Hinting by saying things like, “I’m not really into X” or “I don’t really know much about X” or “I’m not as into this stuff as much as you.”
  • Becoming completely silent.
  • Looking at you less often.
  • Introducing a completely different topic into the conversation.

It’s much easier for Edward to know what’s going on if people ditch polite etiquette. Edward would be completely fine with someone saying, “I’m bored with this conversation. Can we talk about something else?”. But not many people are able to be this direct in their communication style, especially with a kid.

I was speaking to Edward about communication just before I wrote this and he reflected that his conversational style has changed over recent years, in that he is no longer just information-downloading at people but now has conversational turns. I asked him how he thought he had managed to make the change and he replied:

“I think very consciously about what to say to make a conversation work, just like everyone else does.”

My son was unaware that most of us never have to give much thought to talking to people—we just get on and do it. His words made me feel so proud of what he has achieved, but they also gave me greater insight into how much effort he makes just to have a chat with his friends.

With our current education system, it’s easy to get caught up with making sure our kids are making academic progress. But if you are raising or teaching an autistic child, you have the additional task of trying to help them learn these types of social communication skills.

If you are about to embark on “art of conversation” training with your own child, I wish you all the very best.

A version of this piece was first posted here.

The Smith Brothers Use Boxing to Help Spread Autism Awareness

liam-smith4Although Liam Smith suffered his first-ever defeat to Saul ‘Canelo’ Álvarez in the recent WBO light middleweight title bout AT&T Stadium in Dallas, he’s far from a loser in our eyes. Liam, along with older brothers Paul and Stephen, and younger brother Callum, is part of a dynamic professional boxing family hailing from Liverpool, England. In 2013, the family made history when three of the brothers claimed the British light-middleweight (Liam), super-featherweight (Stephen), and super-middleweight (Paul) belts at the same time. Younger brother Callum is also a boxer to be reckoned with, with many experts saying he’s the best of the foursome.

The brothers all fight with the word “Autism” featured prominently on the back of their shorts. They do it to honor their 15-year-old sister, Holly, who was diagnosed with autism at an early age, and to raise awareness of the condition. “People don’t really understand autism,” says Paul. “Holly is a lovely girl but she can’t speak or communicate. So in our own way we are fighting for her.”

liam-smith3

Posted on the Smith Brother’s Facebook page

Callum told Boxing News that, while the four brothers inevitably draw inspiration from each other, Holly is a big driving force behind them. “To see her battling through life every day, but to also see her happy, is inspiring,” he says. “We wear ‘Autism’ on our shorts to raise awareness and show support for other families dealing with autism, because for my mum and dad it is like a 24/7 job looking after her. When she was first diagnosed we didn’t really know what it was. So when someone asks, I explain it. We’re doing our bit.”

And their fans are grateful. Liam told HBO, as part of the hype leading up to the Canelo match, “The four of us try and put it out there about autism and raise awareness… Every single day on social media we get messages…my kids got autism and I think it’s unbelievable what you’re doing for autism.”

We absolutely agree.

One Football Player’s Sweet Gesture Goes Viral

Bo1The feel-good photo of the week has got to be the one of Florida State University wide receiver Travis Rudolph sitting at a lunch table across from 11-year-old Bo Paske, a student at Montford Middle School in Tallahassee, Florida. The photo, and accompanying story, went viral after Bo’s mom posted it on Facebook on Tuesday, to express her gratitude to Travis.

If you remember anything about the middle school years, you likely remember it as a time of change and, possibly, confusion. Peer groups change, education becomes more intense, hormones start raging, and the lunchroom becomes a minefield. Bo, who has autism, spends some lunch periods sitting with friends, but during most of them he just eats his lunch alone. His mom said, “he didn’t seem to mind,” but it hurts her deeply.

Travis was visiting the school with some other FSU Seminoles players as part of their community outreach program. After grabbing a couple of slices of pizza, he saw Bo sitting alone and asked if he could sit down at the table. As Travis explained to the Orlando Sentinel, “He started off and was so open. He told me his name was Bo, and how much he loves Florida State, and he went from there…He was a really warm person.” Travis really didn’t think much of it.

Until later, when somebody showed him what Bo’s mom had posted on Facebook. It read, in part: “I’m not sure what exactly made this incredibly kind man share a lunch table with my son, but I’m happy to say that it will not soon be forgotten… This is one day I didn’t have to worry if my sweet boy ate lunch alone, because he sat across from someone who is a hero in many eyes. Travis Rudolph thank you so much, you made this momma exceedingly happy, and have made us fans for life!”

Travis was moved by the post, and told ESPN: “I was just a kid not too long ago and I remember what the impact was of guys that played in college and in the NFL coming back to us…. So I feel like maybe I can change someone’s life or I can make someone a better person or make someone want to be great or be like me, or even better.”

Before he left, Travis signed Bo’s lunchbox. When his mom picked him up from school, Bo told her, “Mom, I’m famous!” And that was before the Facebook post went viral. The next day, his lunch table was filled with girls.