Tuesday, 11 February 2014

A Parents' Toolbox For Helping Their Autistic Child in Mental Health Crisis

A Parents' Toolbox For Autistic Crisis

Usually when you hear the term Dual Diagnosis, it refers to a mental health disorder accompanied by an addiction. But it also refers to mental health disorders occurring in those with developmental challenges. With Autism in particular, anxiety disorders , if not present at the original diagnosis are almost universally present in adolescence.

If you are the parent of a child with Autism, you are familiar with ''Meltdowns'', the complete and utter loss of behavioural control, often with no obvious cause. When our children are small, meltdowns are horrific. And the comments of others in regards to our child during a meltdown pierce our soul. But soon, whether through formal methods like ABC tracking (antecedent,  behaviour, consequence) or the informal, but invaluable experience of simply living through many many meltdowns, we learn how to anticipate situations that could set off a meltdown and prepare. Prepare ourselves and our children. 


As our children with Autism enter puberty, and anxiety disorders take hold, something terrible happens, all too often. 

Crisis is not an individual event. It is a state of being. A terrible awful state of being. The meltdowns we hated, but learned to cope with and reduce, are replaced with something much worse. Violence and aggression towards people or objects become common place. Our children are just as mystified and scared by this change as we are, which then makes their anxiety, and resulting behavioural problems increase. Which then mystifies and scares them to a greater extent. It is a terrible cycle, the descent into Crisis.

Every parent of an adolescent or adult with autism who has experienced Crisis goes through their own crisis as well. Terrible decisions are forced upon you. Decisions you never expected, nor wanted to make. You question yourself over and over as you travel this path. You feel scared, angry, guilty. As your child's outburst become more and more dangerous, you become afraid. And then you feel guilty. Guilty for being afraid of your child.  You become angry. Angry with all those who are unable to help. And angry with yourself for not knowing HOW to make this easier on your child. Your emotions are all over the map. 

Which makes it VERY difficult to make GOOD decisions, and react appropriately.

Unless you are prepared.

In terms of the Autism Parent's Toolbox, it is better to have what you do not need, than to need what you do not have.

So if you're child is in crisis right now, try to find a quiet time ( yes, I hear you laughing! I said TRY ), go through this article and then prepare what YOU need. 

If you are NOT in crisis, read through this and prepare anyway! A stitch in time......

Behaviour Binder

Every Autism Household should have one. Crisis or not. It is invaluable for new therapists or respite workers entering your home or for emergencies we just can't predict. 

The cover of my son's binder has this sheet (filled out of course!) taped to the front cover. Click here for the PDF version. A copy of this sheet is also placed in the Emergency Folder described below

Tucked into the inside pocket of the front cover I have markers, as well as laminated 'First Then' and 'Eric's Schedule' sheets. Food preferences are a major problem for Eric, he spent 4 days without eating during a recent hospital stay simply because they were not serving him food he would eat. So as a first page I have a sheet with his current food preferences. 

The next page is a Support Plan. We may know what our children like, what their triggers are, and how to soothe them, but others don't. In Crisis you don't want to take the chance you might forget something ( believe me, you will). This was created by the behaviour therapist on Eric's crisis team, but it is something that any parent can do on their own. Just remember to keep it to one page 

The third section of the Behaviour Binder is a comprehensive ''Crisis Prevention and Management Tool'' created by a crisis team, but you could make up something similar yourself. The purpose is to help both yourself and others understand what the LEVELS of Crisis look like for YOUR child, and what can and cannot be done during those times. It makes a huge difference to have it in black and white. Click here for a link to the PDF file for the template. Remember, it is meant to be used in conjunction with a Crisis team, but it will give you an idea of what information you need, and how to present it on paper. As a guideline, here is an abridged version of Eric's overview. Please note, I also keep a copy of this plan in Eric's Emergency Folder, which I'll talk about later in the article.


Other helpful things to place in this binder are : 
  • Typical Daily Schedule (be sure to include a separate schedule for weekends or holidays)
  • A Separate sheet describing times, doses and methods of administering medications
  • ABC tracking sheets (antecedent, behaviour, consequence- for a template click here ) below is  a video that makes ABC tracking easily understandable


Emergency Folder

Like it or not, while our children are in the throws of Crisis, emergencies of some sort are guaranteed. No matter their developmental level or severity, they have a high likelihood of wandering (elopement) or ''running away from home''. There unfortunately is also the moment we all dread, the decision that we never, even in our worst nightmares, thought we'd ever have to make. The moment when their safety, or the safety of those around our child, is at serious risk because of their behaviour. The horrible decision to call the authorities on your child. It is the most guilt ridden, heart wrenching soul devouring decision you will make. And in that moment, you will NOT be thinking clearly, so the Emergency Folder is a MUST. I pray that no parent NEEDS to call the police on their child, but it is all too necessary, all too often, to dismiss.  

My son has a developmental age of somewhere around 3 years old. When he was in crisis, his descent was rapid and the violence escalated exponentially. There came a time where I had to make that call. Had I not made the call, my son would not have been hospitalized and received the medications and treatment and services he needed to escape crisis. Had I not made the call at that particular moment, he would have critically injured himself or I within minutes. But as I stood sobbing on my front steps, a police officer hugging me, telling me I was doing the right thing, all while 3 other police officers subdued my son, whose mind is that of a toddler, who did not understand WHY this was happening to him, as my son screamed ''Mommy, Help'', in that moment, I wanted to die. If you have been through this. You know. If you haven't, I am hoping that you never have to, but if you do, remember, you are not alone.

It is in moments like this, or when your child wanders, that you will need your Emergency Folder. In it, you will put everything you need for an emergency, so that when it happens, you will not forget something important.

Make sure the folder CLOSES in some way. I guarantee, during an emergency situation, that you will pick it up upside down and drop everything if you do not have a folder that closes. Mine is from a dollar store, nothing fancy, but has a velcro closure because if I were to try to open anything more complicated during times of crisis I would be unsuccessful and likely tear the thing apart!!

In your folder place the following:
  • Emergency Contact Sheet (referred to above in the Behaviour Binder section) On this copy, beside your address, write in your nearest intersection (Why your nearest intersection? Because if you must make that dreaded call to 911,  you will likely be so upset that you cannot remember your own name, let alone where you live.)
  • Health Card, Insurance, Drug Card, whatever you need in your area for your child to be seen in emergency
  • Birth Certificate
  • Any Hospital cards or School IDs you may have. Even expired ones. They have information that can be very useful when you are not able to think clearly.
  • A copy of the Crisis Prevention and Management Tool that you can give to whomever you encounter during the emergency and intake. It is INVALUABLE to them in understanding HOW to care for your child PROPERLY and will lesson the chance that they will inadvertently cause your child's Crisis to get worse.
  • A store bought pre-loaded credit card for $25. You don't want to get stuck at the hospital, or trying to get home, and realize that in the melee of your child's emergency you forgot your purse or wallet at home. 
  • Items that will calm your child. In Eric's case I have a package of markers, a connect the dots book and Mickey Mouse colouring pages.
  • Gum. That is for you. You will be very upset. Nervous. Scared. The act of chewing will help relieve some of the physical tension your body will experience because of the emotional tension you are feeling
  • Anything else YOU feel is important for YOU or YOUR child during an emergency. You know your child best. 
Try to keep this folder as portable as possible. Don't include a Teddy Bear for example as an item to calm your child. This kit needs to be something you can grab and run with.


You cannot teach, or introduce, crisis management tools to help your child DURING Crisis. They need to be taught BEFORE there is an indication of Crisis. OR, after Crisis has been managed to the point that life returns to normal. 
Below are some wonderful links and videos showcasing anxiety management, communication tools, relaxation techniques and more. Bookmark them on your computer and visit them often!

On this page there are 23 short video tutorials on the introduction and use of visuals to help with everything from a change in routine, to a volume meter , to muscle relaxation and more. Exceptional resource!

A very effective way to PREVENT anxiety in a person with autism is to prepare them for change in routine. Social Stories are a tried and true method to do so. This link is for The Gray Centre (Carole Gray is the creator of Social Stories) . You can easily create your own once you know the basics. Try this link for picture symbols to use, or download the 'story builder' from Leeds Metropolitan University (UK) here

A fabulous site for people with developmental disorders and challenges, for their families, and their supports. Check it out. In particular, check out this page, the articles and links are incredibly useful!

Get to Know Your Neighbours
In the event of an emergency you want to be able to know that if you forgot to lock the door or turn off the stove, or your other children will be arriving home from school, that you have the phone numbers of your neighbours who you KNOW will help. You want them to KNOW you have a child with autism so that if the unthinkable happens, like wandering or crisis, you will have support, rather than glares, from your neighbours. Create a list of your trusted neighbours, their phone numbers and addresses. Place a little sun symbol beside their name if they are usually home during the day (do not indicate that they are NOT home during the day, for obvious home safety reasons). Stick this sheet in a high profile location. Preferably near a phone, but on the fridge works as well. If you have a cel phone, make a contact entry titled 'EMERGENCY- Neighbours' and list all their phone numbers. This way, during an emergency,  you will simply go down the list until someone answers, rather than trying to remember your neighbour's names. If you do not have a cel phone, make a copy of the list and keep it in your Emergency folder

Although this is Toronto Ontario Canada specific, the information and guidance is translatable to wherever you live.

Although it is Autism ONTARIO anyone can join. If you are wondering how to help your child with something specific, there is no better way than to ask other parents. 

We do not want to have to even consider a time when we will need to know how to de-escalate our child's violent episodes, or worse, have to find a way to restrain them until they are calm. But it happens. It is better to have this knowledge and skill beforehand. Hopefully, you will never need it. Training in CPI is available around the globe. Generally if you contact whatever social service organization you are affiliated with in your area, they can guide you to courses for parents. This link takes you to the main training centre for CPI, and is more appropriate for those working in situations where they are likely to encounter many individuals with anxiety and violent tendencies in their careers, but it will give you a very good understanding of WHAT CPI is.

Whatever your personal opinion of Autism Speaks (yes I have an opinion of their mandate), they provide excellent resources. And this is one. It is a list of Apps that are Autism specific or Autism useful. Each App is given a rating, is qualified as Anecdotal (No specific or related scientific studies for this type of app), Research (There are some related scientific studies, but no direct research support for this type of app or technology), or Evidence (There is solid or specific scientific evidence that this type of app or technology is helpful). Each app is given a category (IE Social Skills) and an age range, as well as listing the Platform for the App. Very useful

Yes, THAT Super Nanny. The link takes you to a YouTube page with various episodes. Watch them. She's one smart cookie

In the throws of Crisis, you will encounter many wonderful people. People whom you will always hold dear to your heart, literally life savers. But you will also encounter those that choose not to understand. Those who will attack. Sadly, sometimes even other parents from Autism Households. They may challenge your decision to implement medications, they may attack your choices. It is in times like that you NEED to remember the first group, the supporters. It will be all too easy to focus on the bullies, but don't. Because if you do you will not have enough strength leftover for you or your child. In times of Crisis, you may want to use the Meme below as a screen saver to keep your focus OFF the negative that will be all around you.

If you know of any tips or resources that may be helpful to families experiencing crisis, please connect with me on FaceBook or comment below!!! 

We are all in this Together!

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