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Thread: A Story of an Autistic Teen with Meltdowns/Rages

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    Default A Story of an Autistic Teen with Meltdowns/Rages

    This is the story of a family trying to cope with their autistic son who is now the size of an adult.
    Cliff does not have Tourette Syndrome, however, the issues raised by this article might be familiar to some of the families on the Forum.
    I do not want to scare families who have children with meltdowns/rages by the bleakness of this article.
    I think instead we should look at this article as a FAILURE OF THE SYSTEM to help parents with tools to properly treat their children and keep the child safe, the parents safe and the people who interact with their children (teachers, police officers, clinic/hospital workers) safe.

    In thinking about rages, Cliff's mother Laura's statement
    “He feels bad afterwards,” she said, “but he can’t control it. It comes from a primitive place.”
    Is especially telling. These meltdowns/rages come from neurology not behaviour.
    Like the involuntary nature of Tourette's tics, these children cannot control what happens when they are in a rage.
    Often they cannot even remember what took place.

    In my opinion, the best solution to curb rages is to figure out what the triggers are, and circumvent them.
    The worse response to a rage is call the police and have the child restrained and put in an environment that will trigger more of the same.
    The best response is to give them a safe, calming environment to come down from this situation.

    This article is a brilliant piece of journalism for describing how this family experiences their son's rages
    and what the shortfalls in the existing system are to take care of cases like Cliff.
    It also contains several calls to action to change the system. Let's hope the system does change, for the Cliffs out there.

    Family seeks crisis centre for autistic teens
    Cliff, a 13-year-old with autism is getting big and strong and his parents can no longer control his outbursts. Families like theirs need an emergency service to help them out.
    By: Marco Chown Oved, Staff Reporter, The Toronto Star, Published on Wed Mar 20 2013

    Imagine having landmines in your house and never knowing when you’ll step on one.

    That’s how Laura Kirby-McIntosh describes life with her autistic son, Cliff. Things are great until he has a meltdown.

    When Cliff was little, they were only tantrums. But now, for the 13-year-old boy who has grown to five foot six and 175 pounds, they’re more like explosions.

    It’s like a seizure, his mother says. He kicks, punches, and yells uncontrollably. It can happen anywhere, at any time.

    For families who have to deal with such periodic crises over and over again, there’s no place to go, no service to provide help. That’s why the McIntoshes are calling on the province to establish crisis centres for autistic kids.

    Kirby-McIntosh says her son lives with more anxiety every day than most people will experience in years. When this stress boils over, his brain is flooded with panic signals.

    A month ago, Cliff had a meltdown during which he was able to overpower his father for the first time, throwing him to the floor and putting a hole in a wall.

    “He feels bad afterwards,” she said, “but he can’t control it. It comes from a primitive place.”

    Autism has skyrocketed to the point where one in every 88 children will now be diagnosed with the disease. Symptoms range widely across the autism spectrum, and by no means do all autistic children have such violent responses to stress. But all need special care.

    The Ontario children’s ministry has quadrupled spending on autism in the past decade, to $186 million.

    But the Star’s Autism Project late last year still found parents in despair, children languishing on wait lists for up to four years, and families overwhelmed by paperwork and bureaucracy.

    Following the series, Ontario’s Auditor General announced it would launch a review of children’s autism services.

    Meanwhile, the system is particularly clumsy when it comes to handling kids like Cliff. When he had a meltdown in school, police were called and had to sedate him to get him to hospital.

    There, doctors didn’t know what to do. Cliff’s symptoms were made worse by all the loud noises and pungent smells in the hospital — the exact opposite of the setting he needs to relax.

    In more than two dozen incidents over the past two years, hospitals have refused to admit Cliff, Kirby-McIntosh said.

    “Everywhere you go, there are wait-lists; there are people who say no,” she said.

    It got so bad last week that Kirby-McIntosh refused to take her son home and ended up staying at a Toronto emergency room for three days, she said.

    Eventually, the family was able to secure some short-term funding to have an in-home worker for a few weeks. But soon, the family will be back to square one.

    Don Blaine, chair of Autism Canada, says their case is “all too common.”

    Despite years of pressure and a 2007 Senate report calling for more funding for autism services, “unfortunately, the situation hasn’t changed a lot,” he said.

    Families with autistic children have been forced to resort to desperate measures. One left their daughter at a long-term care facility after her father was diagnosed with cancer. Another was advised to leave their teen at a homeless shelter.

    “Crisis intervention programs are available across the province for families of children with autism in immediate need of support,” said Ministry of Children and Youth Services spokesperson Breanne Betts.

    The government says any parent in Ontario can call Youthdale at (416) 363-9990 and get immediate access to trained professionals 24 hours a day, seven days a week.

    But Kirby-McIntosh says they need a place to go.

    During a recent brainstorming session with Cliff, he envisioned an ideal autism crisis centre with specialized doctors that would let him stay for a few days if necessary. It would have a ball pit with soft music and soothing lights and a trampoline and a pool — all things that help him cool down and focus without any distractions.

    Now that CAMH has moved into its new buildings, he thinks the old CAMH building might be the perfect place.

    He’d call it Calm-A, a place to relax.
    Tina, Forum Moderator, TSFC Staff Liaison

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    Geneva (March 20, 2013)

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    Default Re: A Story of an Autistic Teen with Meltdowns/Rages

    A new no. has been released this morning of 1 in 50 children have some form of autism.

    Health officials: 1 in 50 school kids have autism | Fox News

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    Tina (March 20, 2013)

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    Default Re: A Story of an Autistic Teen with Meltdowns/Rages

    Thanks for the statistic, Geneva!
    However, when you think about it Tourette Syndrome is supposed to affect 1% of the population (some have it as high as 2-3% for younger populations).
    "1 in 50 school kids" is 2%.

    I'd also like to add rage/meltdowns are not a symptom for all diagnosed with autism or Tourette Syndrome.
    Some US-based stats from "Tigers, Too" by Marilyn P. Dornbush and Sheryl K. Pruitt:
    [Note evaluated in clinical settings or clinic-referred students = those with symptoms severe enough that they need clinical help, not everyone with TS in the general population.]
    "Findings suggest that up to one-third of students with TS who are evaluated in clinical settings experience episodic behavioral outbursts. 94% of rage attacks occur at home and are directed toward parents and siblings and 35% happen at school and target peers. During the storms, 60% of the attacks result in the destruction of property. However, the majority of students with TS-only do not have anger control problems. The likelihood of explosive storms is not related to the severity of the tics but to the comorbidity of ADHD and OCD.
    One-half of clinic-referred students with OCD have out-of-control, angry episodes. They often become excessively angry when others try to interfere with their obsessions and compulsions."
    Last edited by Tina; March 20, 2013 at 11:32 AM.
    Tina, Forum Moderator, TSFC Staff Liaison

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    Default Re: A Story of an Autistic Teen with Meltdowns/Rages

    I was just replying to the "Autism has skyrocketed to the point where one in every 88 children will now be diagnosed with the disease."

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    Tina (March 21, 2013)

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