Autism and Education. Discovering problems, creating potential. A guest post from Matt Davis


Autism Awareness and EducationChildren

Autism Awareness and Education

As I’ve mentioned before I’m a father of an eight year old boy with ASD. So I’ve been writing about autism and education for some time now. So I am delighted to share with you a blog post on the subject from Matt Davis.

Matt is, like me, the parent of child with autism. As well as blogging about his son here he is also Parent Patron of Ambitious about Autism. You can follow him on Twitter at @copyiswritten.

Matt writes “Isaac’s immersion into his specialist school (for children with high functioning autism) has shown some of the marks of a fairly bruising process. And the onerous work has only just begun. We’re seeing a sensitive but substantial stripping back of some seriously stubborn layers of entrenched behaviours, habits, limitations, fears. I have no doubt that so many areas of his development have until now been neglected, denting his constitution. Physically and mentally. A shudder is sent down my spine, contemplating what would happen if he were to remain saddled with certain, what are rightly classified as, deficits.


These deficits, in areas such as strength and touch, have selfishly taken away a realm of positivity I may have always possessed. Dissecting them dispels any romanticism of autism, or ‘he’ll catch up’ that may have roamed, well-intentioned and benignly, in mainstream. They provide a reality check that until now the day to day handling of Isaac’s lifelong condition has been lackadaisical.

He blended as well as he could at his old (mainstream) school considering the pastoral approach that was necessitated by class size, desired integration, and non-qualified staff. Such were the goodwill and intentions and support, I hesitate to cite his considerable developments were in spite of the imposed ethos not because of it. However, his current school’s classroom assessments jettison any ambiguity about a need for intense and individually tailored programmes.

He has what occupational therapists report as ‘definite dysfunctions’ in social participation, hearing, touch, body awareness and balance. At his previous (mainstream) school, both Isaac and his teachers must have needed to adopt crude compensation mechanisms to integrate with the workings of a curriculum that couldn’t adapt appropriately.
I’m imagining that he was sensitively placed in the periphery for physical exercise and any ball sports so his underdeveloped body awareness and balance stayed that way. His stretched teachers must have tolerated rare scribbles when he attempted handwriting because there was no one to provide the one on one labour intensity required.

Through no fault of anyone, Isaac would have been drifting in activities, seemingly content and being involved ever so slightly. But this drift, this surface deep thinly veiled non-developmental behaviour, easy to repeat for him, easier to accept for teachers, would have been insidiously stunting and indeed marginalising. There was daily fall out in terms of his moods that I’ve talked about before. Knowing that long term damage was clearly happening too has unsettled me somewhat.

Social participation and playtimes expose brightest the folly of the non-specific, wholly inclusive approach. Galloping around making train sounds was his self-stimulating behaviour for surviving the furious environment that is the school playground. The soothing repetition went way beyond its initial positive effects, explaining precisely his deficits in play and social areas.
Indeed, in one of our more heart crushing sessions with Isaac’s psychotherapist, she made the knocked-me-for-six observation that Isaac doesn’t know how to play. He simply hasn’t ever done it. Play, a natural, sought after, intuitive, life affirming activity for typical children. An alien, complicated, bamboozling concept for Isaac.

(And how’s this for a topsy turvy thought: Isaac taking his sister’s toys and studiously playing with them alone is a good thing. Sublimating what appears to be jealousy into a desire to ape and learn.)

Heart breaking by the psychotherapist. But, as with so much emanating from his new school, enlightening too – offering up glimmers of hope. Specialist school is bruising for its pinpointing of challenges, healing for how it deals with them.

Like a slow turning tanker, sent ever so slightly off course, I’ve discovered riding waves of positivity and potential, knowing real, honest insight can reap so much.

Take handwriting. My inclination was to wallow in reports of inabilities to develop finger separation, his frustrations at the necessary tripod grip, the clear need for major work with fine motor skills. Whereas Isaac’s tenacious teacher pushes and compliments and improves and stimulates. His writing has literally transformed. At night he deliberately and defiantly stretches his fingers, discovering a dexterity, before formally announcing to me, “Daddy, today a certificate has been awarded to Isaac Davis for holding a pen properly. Well done Isaac.”

Isaac’s weekly certificates, which he avidly collects and collates, reveal so much of the school’s (and therefore his) industry. ‘Having three bites of a carrot’, ‘dealing with change’, ‘good listening and not having to repeat’ – in short, he’s working, and being worked, very hard in those areas that appear an anathema to his autism. Non-intervention is these areas has led to the deficits and therefore habits and limitations. Everyone, myself very much included, had given up, kept a blind hope, or consciously avoided these life skills with Isaac. Now life skills form part of his week, with patient, single minded professionals giving him the tools to succeed. Which in turn gives us the confidence to carry on the work at home – knowing when he can deal with something new, or eating his dinner at the table, tasting a new food he may have tried at school, maybe parking in a different place to a previous time. It’s far from easy, we’re fine perfecting the skill of distinguishing real distress from autistic like behaviours he can learn to manage. He will always have the generic sensory processing difficulties. The meltdowns are still explosive, world ending and catastrophic – in many ways they are amplified and more gruelling for all parties. Transition, people leaving, will always be testing. But we are learning, just like him, a little more what his capabilities are and where discipline works.

All this is not to say autism is not championed, celebrated and respected. Indeed, it’s the filter upon which the school appears to make and evaluate every decision. They’ve seen vividly Isaac’s visual approach to learning – playing to this strength, they use the visual timetable which he rattles off to me, the whole week, in order, at least twelve subjects a day. He enchants teachers and pupils alike with his brilliant recollection of facts. This part of his autism is nourished and cherished.

Yet at times he can struggle to answer a simple question. He can be caught in a self-imposed routine and repetition rut.

The school will slavishly break down each topic in his timetable into explicitly described and audited mini chunks that he knows and expects. But then they may introduce a ‘surprise’ activity within this tight framework. Like learning comprehension in a reading class – about a certain book and character he’s prepared for. So he’s developing thinking skills and small change in one brilliantly efficient ten minute session. Totally, utterly inspired and priceless.
Likewise, his repetition needs are an ingrained feature of Isaac’s very existence. Always will be. But gentle easing out of, not so heavy reliance on, can take place. The genius strategy here is mentoring sessions with the elder boys. Who “like to repeat; we did when we were young like Isaac, but we don’t anymore. Isaac won’t always need to.” Who better to understand a little boy with autism than a big boy with autism? Who knows the desires and impulses and defaults. And can integrate them with socially appropriate behaviour. This is life enhancing stuff of a dizzying degree.

One massive truth is Isaac’s autism has never seemed as tangible as it is now. Despite all the intervention. And that feels correct and just how it should be. His vocabulary continues to expand to significant levels with it all appearing learnt like one would learn a foreign language. He seems to rapidly search his abundance of learnt phrases when needing to express something. “I’m going to read a book, just once, because it will tire me out. Then we won’t do it for a while.” Or when he senses change: “Yes daddy, I have changed my mind, you can drive on that road, because it is like a diversion.” And when he’s happy: “I love school, I want to go there today and forever, I want to give the building kisses.” In the morning: “Is it morning time? Good morning daddy< I haven’t been asleep for a while…”

His order can always be jumbled, with tenses astray. “Where’s the 302 bus, I might have lost it.” And it’s all delivered with a clunky, metronomic rhythm. This is him. It has an almost beautiful realism and logic. When I said to him “come on mister” recently and he got agitated and countered “No! I’m Isaac. Mister is for teachers”, I could but go concur (kind of) apologise and go with him. The school seem on the same page – it feels like they write the pages. Gloriously they’re as smitten as we are by my son.

His interests remain at best perfunctory. He loves lampposts; they light up his life. “But I love lampposts daddy, they make me happy.” Counting, spotting anomalies, one’s on during the day, off at night; he has a photographic recollection of locations, types, flickering ones – every single permutation of a lamppost’s life. They offer so much. And this dry information floods our airwaves as it does bus facts and general commentary and comings and goings.
These sort of passions – their pros, their pitfalls – inform the armoury of knowledge the school possess about Isaac. They can then work with him, push buttons, reward and restrict, so accelerating to a potential. Teaching him life skills for example in a methodical, easy to digest, autism friendly manner, gives his preparation for an integrated, inclusive life. This is what I feel when I hear: “Today I did life skills. I made toast, daddy do you want toast? With honey or marmalade. In a toast rack, that’s where toast is made. Do you want toast?”

This is no political polemic about specialist schools versus mainstream. It’s about finding the best possible place for my son and his autism – with the best possible professionals and best possible environment for him to develop, and who knows, work towards a brilliant future.
A pertinent comment his teacher made to us when discussing his substantial handwriting training said it all really:

“He needs to write. He will need to write a job application form one day.”

You can read the original here.

When Your Child with Asperger’s and Autism Spectrum Disorder is Bullied – a guest post from Pamela DeLoatch


Autism Awareness Butterfly

Autism Awareness Butterfly

It’s not just about your child being picked last for the kickball game or not making new friends at school, it’s about the derogatory comments towards your child from other children or the lack of empathy from the adults in his/her life. Finding the right tools to help your child with Asperger’s and Autism Spectrum Disorder and educating those who interact with your child, will help lead you all down a path towards a bright future for your child.

We have look at initiative around bullying before so we are delighted to share this guest post from Pamela DeLoatch. You can read the original here. A free tool kit to download is also available at the Round Table web site.

DeLoatch is a staff editor for RTC who has contributed to nearly a dozen books including Classroom Heroes, Not Your Mother’s Hysterectomy, Chasing Hope, and an entire slate of books in production.

She writes “Janine* sat on the park bench, shivering slightly in the unexpectedly chilly late September afternoon. Luckily, she had dressed Lila and Trent right for the weather — better than she had dressed herself, she thought, looking down ruefully at her capris and t-shirt. Lila, at 11 months, sat in the stroller, shielded from the wind coming off of the lake. Dressed in jeans and a soft, hooded sweater, Lila crammed an animal cracker into her mouth and banged on her stroller bar in delight.

Trent didn’t always notice what was going on around him. Or even in front of him. He found the world inside his head more interesting than the world outside. Asperger’s Disorder, the pediatrician told Janine and her husband, David, back when it became obvious that Trent had difficulty interacting with other children. Three years later, the symptoms of Asperger’s Disorder (now categorized as Autism Spectrum Disorder in the Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition) had not changed.



Janine sighed, remembering dropping Trent off at preschool, how the other kids rushed to join their friends wherever they were playing. Trent always sought out the construction toys, never seeking a playmate.

“Why don’t you go and play with Trent?” the preschool teacher would prompt one of the boys in the class. “No. I don’t want to play with him,” they’d say. Or, “He’s not my friend.” Or worse, “I don’t like him.” Janine’s heart hurt, seeing her little boy so solitary.

After the diagnosis, Trent began working with a licensed child and adolescent psychologist and joined a weekly “play group” with other children who needed help with social cues. When it was time for elementary school, he joined a mainstream classroom. Although he did well academically with the support of his teachers and the classroom aides, he still didn’t have any friends. Until recently, Trent didn’t seem to mind, but this year, as he entered second grade, things were different. Trent hadn’t complained, but then again, Trent rarely talked about his emotions. Instead, Janine noticed that when Trent was at home and was frustrated with a Lego project, he’d hit himself on the head and furiously hiss, “You’re a dork,” or “You’re so stupid,” or “That’s why nobody likes you.”

When Janine asked Trent why he said that, he ducked his head and shrugged. Was someone saying those things to him, Janine thought. Wondering if Trent’s behavior was related to school, Janine met with his teacher. The kids did tend to leave Trent out of their play, Lisa Rutherford admitted. “In my twenty-five years of experience, I’ve found it best to let the children work out their own problems,” she explained, not unkindly.

“But Trent doesn’t always know how to work out those problems — that’s a classic issue with Asperger’s!” Janine protested.

“I know it’s trite to say that boys will be boys, but frankly, it’s been said so often for a reason,” Lisa responded. “The more I push them to include Trent, the meaner they will be to him.”

Janine was at a loss. “So the answer is to do nothing if my son is being bullied or ignored?”

The teacher sighed. “Look, I don’t condone name-calling or bullying. But even when they invite Trent to join in, he doesn’t want to unless he’s in charge of the game. He always wants to play with the same toys and he hates to share. Asperger’s Disorder or not, that doesn’t make for a good experience for anybody.”

Janine left the meeting frustrated, with no solutions. She could understand why other kids didn’t like Trent’s bossiness. It was a lot to ask elementary school kids to understand a disorder she didn’t always understand herself. She just wished Trent’s behavior didn’t result in kids turning on him. How could she help her son recognize and protect himself against bullying? Did Trent even see how the other kids treated him, beyond name calling, beyond being excluded from Wall Ball on the playground? Trent had never been invited to a birthday party, and when she occasionally went to have lunch with him at school, she noticed other boys shuffled around to avoid sitting next to her son at the lunch table. It had to hurt Trent in some way. It certainly hurt Janine.

Even now as Janine glanced cross the playground at Trent again, two boys walked up to the pile of dirt Trent was building. Janine held her breath, waiting. Maybe they’ll ask to play with you. If they do, please remember to share your shovel and bucket. She could hear the two boys chuckle. That could be a good sign. Then the shorter of the two boys kicked the pile of dirt at Trent.

As Janine stood up, Trent yelled, “Hey, give that back!” He pointed to his bucket and shovel, now in the hands of the taller boy.

“You’ll have to catch me,” the boy taunted.

Trent scrambled up, red-faced. The new boys took off, running across the playground as if it were an obstacle course, with Trent awkwardly chasing from behind.

With a quick check to ensure Lila was securely buckled in the stroller, Janine pushed the stroller as she ran, trying to catch up

“Trent! Wait!”

The boys continued to dodge Trent, pausing behind the slide and swings so he could almost catch up, then running ahead again.

“That’s my stuff! You took my stuff!!” Trent shouted, loud enough that the other parents in the park looked up.

“Hey! You boys! Give my son his toys back!” Janine yelled, catching up to Trent as the boys circled the sandbox once more. She put a calming hand on Trent’s shoulder. Trent stared at the boys, fists clenched, breathing heavily.

“Brice, Daniel—give that child back his toy!” a woman sitting on a bench near the playground called tiredly. “We’re going home.”

“Stupid kid,” the taller boy mumbled as he walked close to drop the shovel and bucket at Trent’s feet. “We were just playing with you.”

“Yeah. Just playing,” the shorter one chimed in.

Trent launched himself at the boys. The taller one dodged, but Trent tackled the shorter one, knocking him into the sandbox. Janine pulled Trent off, but not before he landed two punches.

“Get your kid off of my son!” The other mother ran to the sandbox and hauled her son up. “You okay, Daniel?” she asked, brushing sand out of his hair.

Teary-eyed, Daniel nodded. His mom turned to Janine. “Your son is a bully. Daniel didn’t deserve that. You really need to get control of him.”

“Your sons started it,” Janine shot back, and then stopped, feeling childish. Looking around the playground, at the parents and children avidly watching them, Janine was exhausted.

Was this what it was going to be like for Trent? Would the only kids who interacted with him be mean to him? Would he start believing he was a “stupid kid” or a “dork” because that’s what his peers told him? How could she help him at school and at home when the difficulties associated with Asperger’s Disorder made it hard for him to read, understand, and react to social cues and situations?

She reached out to put a gentle hand on Trent’s stiff back, but stopped. He would hate to be touched right now. Turning the stroller, she said wearily, “Let’s go home.”

The truth about bullying

Unfortunately, for children with Asperger’s Disorder and Autism Spectrum Disorder, bullying can be a fairly common event. Not only are children with Asperger’s bullied frequently, recent research shows that some bullies actually use the bullied children’s emotional vulnerability against them, frequently trying to trigger meltdowns. That makes it even more imperative for parents of children with Autism Spectrum Disorder to educate themselves and acquire the understanding and tools to help their children.

Here’s what the ORP experts, both parents and professionals, suggest:

  • Understand the seriousness and impact of bullying and know that it must be addressed, not ignored.
  • Observe your child’s behavior. Is he reluctant to go to school, does he avoid certain classes, or complain of frequent headaches and stomachaches? Does he have bruising or cuts? Is she missing personal items? Does he act like a bully toward younger siblings?
  • “Check in” with your child. Ask your child if anyone is being mean to them and if so, what is happening and how it is affecting them.  Reassure them that you want to help and just want to make sure they are okay.
  • Help your child practice assertive responses such as “I want you to stop doing that,” “I want you to leave me alone,” and to also be ready to go to an adult as the next step if this doesn’t work. Inform the school of your concerns. Many schools have improved “anti-bullying” programs and want to be informed of bullying incidents. Work with teachers and school administrators to develop a plan for your child to get additional support.
  • Involve your child in peer support groups and additional therapeutic groups directed to help kids with Autism Spectrum Disorder build social skills, improve self-esteem, and foster increased self-efficacy.
  • Involve your child in extracurricular activities with peers who have similar interests to develop more potential friendships and beneficial social interactions.

Unfortunately, bullying is a fact of life for many kids, not just for those with Asperger’s Disorder or Autism Spectrum Disorder. But there is good news: you and your child are not alone. And, with a willingness to help, a commitment to open communication, and a few new tools – you can help them develop the skills to negate bullying and build positive relationships.

*Names have been changed to protect the privacy of the individuals interviewed for this story.

Autism and Blogging – Please help a student at Gothenburg University with some research.


Gothenburg University

Gothenburg University

Autism and blogging is, as my regulars will know, a subject close to my heart. Indeed one of the first areas I covered when I started this blog was the disappearance of many Autism bloggers.

So I am very interested in supporting Ekaterina Boytsova, a student at Gothenburg University, who is conducting some research in the area.

Boytsova writes “As a master student in Gothenburg University (Sweden) I am now conducting a research dedicated to autism and blogging and their communication experiences transmitted via posting. It is not much written about narrative practices of people with autism especially in the dimension of Internet. That is why I find it important to convey a message to the scientific community about the necessity and advantages of computer-mediated interaction via blogs and social networks. I believe those who already benefit from it will stand for wider implementation of information and communication technology tools in an educational context as well.

That is why I kindly ask a person with autism keeping his/her blog to take part in my survey which is confidential. However, if you want your blog to be referred to, it is also possible to put your name and the link in the reference list.

If you have any further question on participation or want to see the support letter from the supervisor, please contact me gusboyek@student.gu.se

 


If you have any queries please feel free to mention them in the comments section and I will ask Ms Boytsova to respond.

Happy Chanukah to all those celebrating


Happy Chanukah

Happy Chanukah

PatientTalk.org would like to wish all our readers a Happy (and healthy) Chanukah this holiday season!


What are your New Year’s Resolution for 2015?


New Year's Resolutions

New Year’s Resolutions

Yes it is THAT time again.

Half way through the eating and drinking too much time of the year our thoughts should (and sometimes even mine do) turn to getting more healthy in the New Year.

There is plenty of useful advice out there like this interview we conducted with Pete Cohen looking at weight loss, sensible drinking and getting fitter with better exercise.

But I was wondering what New year’s resolutions have you made for 2015? It would be great if you could share yours in the comments section below. This will, hopefully, give inspiration for other people reading the post.

So I thought I would share by kicking off with a few of my own.

a) Lose weight, 20lb in my case over the year. Here are a few tips that may help.

b) Cycle 180 miles coast to coast across the Pennines. You can check the route here

c) Have a dry January. Sounds boring but it works really well for me.

d) Be able to run 5K without a break by the end of the summer.

e) Eat at least one portion of leafy green vegetables each day!

That’s my list. So what’s yours? Please share below.

Thanks and good luck.


My Emotions Chart – Helping your child identify and understand emotions


My Emotions Chart - Helping your child identify and understand emotions

My Emotions Chart – Helping your child identify and understand emotions

 

Our freinds at Round Table have produced this Emotions Chart and have asked us to share with our readers.

You can use it to help you child share their emotions and feelings!

Please share on!


Alzheimer’s disease – Why I am giving my brain away!


Brains for Dementia Research

Brains for Dementia Research

This is one of those Christmas stories we love.

Robert and Lindsay Mudge are a unique couple. They plan to give away their brains after they die.

Robert was diagnosed with Alzheimer’s disease in January 2013. Alzheimer’s is a physical disease that affects the brain. During the course of the disease, protein ‘plaques’ and ‘tangles’ develop in the structure of the brain, leading to the death of brain cells. It is the most common cause of dementia.

Robert went to his local GP and was referred to Loughborough Memory Clinic and three months later, after undertaking various memory tests, he was diagnosed with early on-set Alzheimer’s disease.


Lindsay said: “Our experience of the NHS has been excellent and they have done everything they can for us. But interestingly when Bob was diagnosed, the first thing we were told was ‘It’s early on-set Alzheimer’s and there is no cure. We can maybe help the symptoms but it’s progressive and there is no cure. The medication may slow the disease down, but there is no cure.’ We made it clear that we wanted to be involved in research. They didn’t ask us.”

Robert and Lindsay were determined to find out as much information about the disease as possible and discovered the Alzheimer’s Society website, where Robert noticed an advertisement for the annual Alzheimer’s Show held in London during the summer in 2013. Robert and Lindsay decided to go and while they were there, Lindsay found an article about Brains for Dementia Research (BDR) which is a partnership between Alzheimer’s Research UK and the Alzheimer’s Society. BDR promote brain donation and develop a network of brain tissue banks for dementia research. They discussed it and Lindsay gave them a call.

Catherine Thompson is the DeNDRoN (Dementia and Neurodegenerative Diseases) research nurse for the Clinical Research Network: East Midlands based at Leicester’s Hospitals. She contacted Lindsay and Robert to discuss what was involved in donating your brain. As part of the visit, she explained that the BDR trial needs brains from both sufferers of dementia as well as non-sufferers. This is so a full comparison can be made.

Catherine explains what it is that inspired her to work in research in this specialty area: “I love my job as a nurse. I especially enjoy meeting new people who are interested in research and finding out more about them and their families’ lives. I have been a nurse for over 25 years and this has been by far the most rewarding job I have ever had.”

When asked, why be involved? Robert stated: “I just want to learn as much as I can about what’s going to happen and to help people understand how it works.”

Lindsay agreed: “Catherine brought the paperwork, took us through it and discussed it. She left us to think about it for a few weeks, before arranging a follow-up appointment where we signed a consent form. I’m quite at ease about it but it is handled very gently, carefully and professionally. At any time you can withdraw. It’s nothing to be fearful of; they’re guided by you all the time.”

“Taking part in research makes us feel better. We’re doing something. And we are doing it together.”

Personal, Solitary, Parenting Pain: The Emotional Turmoil Surrounding Extremely Aggressive and Behavior in Your Child with ASD – a guest by Amanda Ronan shared by Round Table Companies


Advice for autism parents

Advice for autism parents

Our friends at Round Table Companies have shared with guest blog post , by Amanda Ronan, with us.

Ronan share tips and ideas for helping parents with a child on the spectrum who live through extreme meltdowns and aggressive behaviour. You can read the original article here Personal, Solitary, Parenting Pain: The Emotional Turmoil Surrounding Extremely Aggressive and Behavior in Your Child with ASD.

Ronan writes ”Please . . . please don’t wake up, Nora pleaded silently. A dog barking somewhere in the neighborhood had startled her fully awake, though she hadn’t really been sleeping; she’d been in the half-sleep state she’d been surviving on for as long as she could remember.

Yesterday had been the hardest day yet, and that was saying a lot, given what her family had been through over the past 15 years of living with her son who had an autism spectrum disorder (ASD), and extreme behavioral problems. They had been heading into lunchtime after a morning during which Ander had enjoyed all of his normal routines—the same breakfast he’d eaten every day for years, a quick shower, and a few hours of homeschool instruction. Now he was engrossed in his normal weekday TV show as she prepared to make his normal lunch. Routines were important, even crucial, to Ander—and to the peace of the household—so Nora had arranged her life in order to maintain them. Spontaneity, and doing things in the spur of the moment, were four-letter words in their home.



Ander would only eat nachos. There had to be only a small pile of chips, whole triangles with rounded corners, not pointy. The cheese had to be a Mexican blend with both white and yellow-orange shreds visible. The salsa had to be red and mild, pureed with no chunks. This was part of the obsessive-compulsive disorder that the new psychiatrist said her son had, along with ASD and attention-deficit hyperactivity disorder. But as Nora looked in the refrigerator, she cursed under her breath. They’d run out of cheese the day before and she hadn’t had time to visit the store.

“Hey buddy?” she called out. “How about I make us some pizza for lunch today? I know you love pizza and it’s pepperoni – your favorite!” She peeked around the corner into the living room.

Though Ander had headphones on, she could hear the sound. His expression was one of concentration, as though he’d found a moment of peace from his constant struggle to self-regulate, communicate, and actively participate in the world. She waved a hand at him. He didn’t respond.

She knew better than to remove the headphones for him. She’d tried that a few years ago, right after he hit puberty. That was the first time he’d hit her hard, a succession of several slaps to her head until she dropped the headphones and backed away. It was shocking and gut-wrenching. Before that he would lightly hit her—more in a way to get her to leave him alone.

Aggression itself wasn’t new; it had started a few years before kindergarten when he bit both his sister and the family dog, just days apart. Both had howled and become nervous around him after that, having lost trust for a period of time. Nora lost something, too at that time—the hope he’d be ready for school. Despite all the interventions, medical appointments, and therapies, she realized as she tended to her daughter’s wound that Ander might not successfully go off to kindergarten, play with the other kids, and maybe become a teacher’s pet. The journey ahead could be long and difficult; she could no longer deny it.

Not long after the biting, his meltdowns, which once had resembled a whining child’s tantrums, took another unexpected and dangerous turn when he started to throw things in the house and punch the walls. The sound of his knuckles against drywall made her stomach turn. She learned to go into the kitchen for some bandages and ice to apply to his hand when he had calmed down.

Then came the day of the windows. She would never forget the first time she heard the sound of glass shattering. Ander had put his head through the window; incredibly, though, he was unscathed. He turned around to face her, then curled up on the floor and rocked himself until he fell asleep. It took two more broken windows for them to hire contractors to install shatterproof glass windows.

Nora knew that the increased agitation, self-injurious behavior, and aggression stemmed from Ander’s difficulties with communication, social interaction, and self-regulation and that he never truly meant to cause harm and hurt himself or others. But there were times when, for his own safety and the safety of their daughter, Nora and her husband Peter had had to use the physical intervention techniques they’d learned from Crisis Prevention Institute (CPI): carefully wrap their arms around him, remove him from the circumstances, and attempt to defuse the situation. Physical restraint was always a last resort; no parent, Nora was sure, ever wanted to restrain his or her child. As he got bigger, though, she worried about what would happen if this “last resort” was no longer an option due to his size.

She found this out the day there was no cheese in the refrigerator.

When Ander saw that lunch was not what he’d expected, there was a sudden shift in his demeanor and affect. His eyes narrowed, his head shook from side to side, and his feet stomped the ground. A flush also began to creep up his neck.

“It’s okay, buddy,” she said. “The pizza is just for today. We’ll have nachos again tomorrow, just like we always do, ok?”

Ander opened his mouth and screamed at her, flapping his arms so that one palm smacked the glass breakfast table making it jump a bit. Nora jumped herself, backing up slightly. She couldn’t help it: she was actually feeling afraid of her own son. He had hit the table so hard…It wasn’t supposed to be this way…she thought to herself.

And then, in a sudden burst of movement, Ander jumped up, ran towards her, and tackled her. Nora fell backward, her elbow cracked against the tile floor, and the impact knocked the air from her chest. She was gulping like a hooked fish when Ander landed his first punch on her cheekbone. The next one caught her neck and the third her right ear, and her head reverberated with shrill ringing. Finally, with a gasp, she filled her lungs, but she couldn’t push free. Ander was stronger. So she cried helplessly as her baby boy howled and beat her. The once chubby hands that used to grasp at toy cars had become powerful fists that continued striking her until, mercifully, her husband opened the front door. Then it stopped as quickly as it had begun; Peter was still strong enough to pull Ander away from Nora—for now.

After the barking dog woke her, Nora wondered through her familiar exhaustion whether she really knew her own child, knew how to care for him, what he needed, or even knew how to be a good parent. She closed her eyes and willed the barking to stop. When it finally did, she exhaled, not even realizing she’d been holding her breath.

Nora strained to listen for any slight noises, any movements that might indicate that Ander’s sleep had been disturbed. Not hearing anything, she let her neck muscles relax and her head sink back into the foam pillow. The bedside clock saturated the otherwise dark room with the same deep red hue as the bruises on her body. In two hours, a new day would start. And she had no idea what it might bring.

As a parent of a child with ASD and extremely aggressive behavior, perhaps you can envision yourself in this story, which reflects actual parent interviews and other informed sources. Maybe you, like Nora, are feeling alone, lost, hopeless, and more disconnected than ever before.

If you are living constantly on the edge of your seat, “walking on eggshells”, trying to avoid another meltdown or manage the aggression, the self-injurious behavior, and the violent outbursts, you aren’t alone. With the U.S. Centers for Disease Control and Prevention reporting that one out of every 68 children is being identified with ASD—a huge increase from 2000 to 2010 alone—the emotional and physical turmoil associated with ASD and extremely aggressive behavior is becoming is becoming a more common scenario.

When you begin to fear your own child, it’s time to ask for help. Here’s what some parents and experts recommend:

* Build your team. Seek the assistance of a therapist with expertise in autism spectrum disorder and behavioral approaches. This person can help you assess your environment, identify triggers for behavioral problems, help with structure and routine, and provide strategies at home to prevent meltdowns and aggressive behavior. Speech therapists, occupational therapists, special education teachers, and autism in-home providers can also provide you with strategies to teach communication, social, and self-regulation skills. Respite providers and support groups can also offer provide a great deal of support for you and your family.

* If what you’re doing isn’t working, then try something different. Maybe it’s time to consider medication. Psychotropic medication does not “cure” ASD but it is often helpful for extreme emotion and behavior problems. While many parents feel fear or hesitation about using medication with their child, the right form of psychopharmacological intervention may be helpful for symptom relief and also allows therapeutic approaches to be more successful, ultimately, so that medication is not necessary in the future. Also, if your child’s therapist is not providing you with ideas and strategies to try at home to minimize the behavioral outbursts – and it seems like they are just doing a lot of “talk therapy” with your child – then it might be time to seek a second opinion. Most insurance companies will cover this type of service. If your child is in special education, and you believe that there is not a “good fit” between his needs and the services provided through the IEP – remember: you have the right as a parent to meet with the IEP team to discuss your concerns and potential changes to the plan.

* If it’s an emergency at home – then act like it – call the police or a crisis response team. Contact the Department of Human Services (DHS) in your county or jurisdiction and inquire about emergency crisis services. This is a good proactive step. The police should always be contacted if necessary but remember their primary responsibility is to ensure safety – and they are not usually very familiar or trained in how to effectively work with children with special needs. Always take necessary action to keep yourself and your family safe.

* If you’ve truly exhausted your emotional resources–then consider out-of-home care. Community-based homes and therapeutic residential treatment programs are available through county and school district funding and provide access to therapeutic care that is consistent with the individual needs of your child. They can be short-term or more long term options. Contact your local DHS or do a websearch on programs in your area – and then start making phone calls to learn more.

Parents: Remember, you don’t have to feel afraid and isolated in your own home. If you are in a very difficult situation with your child with ASD and extreme aggression, remember that you have not failed. You’ve done your best with what you’ve been given – and it’s time for more help. You are a loving, concerned parent who is trying to manage a situation that has become unmanageable. Having an awareness that you need help – and it’s okay – is one of the first steps necessary in doing what’s best for you, your family, and your child.”

Amanda Ronan is a writer, an editor, an educator and a dreamer. She has her Master’s in Education and was a teacher of elementary and middle-school aged children for nearly ten years. While engaged with her work in the classroom, Amanda rediscovered her first love — writing.

Find out more about the first-ever Universal Health Coverage Day


Universal Health Coverage Day

Universal Health Coverage Day

A new global coalition of more than 500 leading health and development organizations worldwide is urging governments to accelerate reforms that ensure everyone, everywhere, can access quality health services without being forced into poverty. The coalition was launched today, on the first-ever Universal Health Coverage Day, to stress the importance of universal access to health services for saving lives, ending extreme poverty, building resilience against the health effects of climate change and ending deadly epidemics such as Ebola.

Universal Health Coverage Day marks the two-year anniversary of a United Nations resolution, unanimously passed on 12 December 2012, which endorsed universal health coverage as a pillar of sustainable development and global security. Despite progress in combatting global killers such as HIV/AIDS and vaccine-preventable diseases such as measles, tetanus and diphtheria, the global gap between those who can access needed health services without fear of financial hardship and those who cannot is widening. Each year, 100 million people fall into poverty because they or a family member becomes seriously ill and they have to pay for care out of their own pockets. Around one billion people worldwide can’t even access the health care they need, paving the way for disease outbreaks to become catastrophic epidemics.

“The need for equitable access to quality health care has never been greater, and there is unprecedented demand for universal health coverage around the world,” said Michael Myers, Managing Director of The Rockefeller Foundation, which is spearheading Universal Health Coverage Day. “Universal health coverage is an idea whose time has come – because health for all saves lives, strengthens nations and is achievable and affordable for every country.”


For much of the 20th century, universal health coverage was limited to a few high-income countries, but in the past two decades, a number of lower- and middle-income countries have successfully embraced reforms to make quality health care universally available. Countries as diverse as Brazil, Ghana, Mexico, Rwanda, Turkey and Thailand have made tremendous progress toward universal health coverage in recent years. Today, the two most populous countries, India and China, are pursuing universal health coverage, and more than 80 countries have asked the World Health Organization for implementation assistance.

“Putting people’s health needs ahead of their ability to pay stems poverty and stimulates growth,” said Dr. Tim Evans, Senior Director for the Health, Nutrition and Population Global Practice at the World Bank Group. “Universal health coverage is an essential ingredient to end extreme poverty and boost shared prosperity within a generation.”

The 500+ organizations participating in the first-ever Universal Health Coverage Day coalition represent a diverse cross-section of global health and development issues, including infectious diseases, maternal and child health, non-communicable diseases and palliative care. Across these issues, knowledge and technologies exist to save and improve lives in significant numbers, but the impact of these tools is severely hampered by lack of equitable access to quality health services.

“Ebola is only the most recent example of why universal health coverage is the most powerful concept in public health,” said Dr. Marie-Paule Kieny, Assistant Director-General for Health Systems and Innovation at the World Health Organization. “Investing in strong, equitable health systems is the only way to truly protect and improve lives, particularly in the face of emerging threats like the global rise of non-communicable diseases and increasingly severe natural disasters.”

Events in 25 Countries Mark First-Ever Universal Health Coverage Day

Organizations around the world are calling on policymakers to prioritize universal health coverage, and are hosting events on 12 December to catalyze action, including:

  • New York, USA: High-level event on Ebola and resilience, organized by the Permanent Missions of France, Japan, Germany and Senegal to the United Nations, in collaboration with The Rockefeller Foundation and the Columbia University Mailman School of Public Health.
  • London, UK: Expert panel at the London School of Hygiene & Tropical Medicine on creating resilient, equitable health systems, organized in partnership with The Rockefeller Foundation and Action for Global Health.
  • New Delhi, India: High-level event on universal health coverage implementation in both India and the global context, convened by the Public Health Foundation of India, Oxfam India and the World Health Organization Country Office for India.

Why do young people with Type-2 Diabetes go on to develop heart damage?


Diabetes Awareness

Diabetes Awareness

A new study led by a research team at Leicester’s Hospitals hope to reveal, using magnetic resonance imaging (MRI), why young people with Type-2 diabetes develop heart damage.

The research team, led by Dr Gerry McCann, Consultant Cardiologist at Leicester’s Hospitals and NIHR Fellow and Professor Melanie Davies, Honorary Consultant at Leicester’s Hospitals, Director of the Diabetes Centre and Professor of Diabetes Medicine at the University of Leicester, are going to use MRI scanning to determine what causes early heart failure in 100 younger adults with diabetes.

The study will randomly allocate patients to different treatment arms. The first group will receive optimal blood sugar lowering treatment and lifestyle advice. The second, a very low calorie diet and the third, moderate intensity exercise training. The research team hope that conducting MRI scans throughout this period will indicate whether early heart damage can be completely reversed.


Dr McCann stated “Patients with diabetes are four times more likely to develop heart failure and other circulation problems. Younger diabetics have the greatest life-time risk of complications and death. It is essential that we develop tools to diagnose heart failure early and effective treatments to prevent this serious life threatening condition progressing. This NIHR award will see Leicester’s cardiovascular and diabetes research units working together to combat heart failure developing in patients with diabetes.”

It is hoped that by using the evidence produced by the MRI scans to compare the different treatment methods, it will lead to better treatments that prevent hospitalisation with heart failure and premature deaths.

Prof. Davies noted “We have seen a dramatic increase in the numbers of people developing Type-2 diabetes at a younger age. Our previous work has shown that younger people already have evidence of heart damage. We want to see if we can intervene and reverse these really worrying changes.

I am delighted that we have been awarded this prestigious award funding to allow us to carry out this important and innovative work in Leicester.”

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