Wednesday, 13 July 2011

Aggressive Challenging Behaviour.... with Autism

It is very difficult for me to write about Aaron's challenging behaviour. I want to forget incidents as quickly as they have happened and try not to reflect on them too much other than to question - what could I have done different to avoid this and what were the antecedents?

However I have just submitted documents to the local authority to support our request for residential placement for Aaron. (I will discuss the whole residential placement issue in another blog.) One of the documents is 9 pages of descriptions and incidents of challenging behaviour. Since this is a fundamental consequence of Aaron's life with autism I thought I would share them here, in installments.


Aaron was diagnosed at 3 years old and is now 8 years old. We have found that his behaviour is cyclical and that he goes through phases that last a few weeks to a few months. Likewise his interests vary, e.g., one week he may like puzzles, whereas the next week Aaron shouts at us if we even mention the word ‘puzzle’. We followed an ABA-VB (Applied Behaviour Analysis with Verbal Behaviour) programme with Aaron while we lived in Geneva and neighbouring France and were guided by the therapists’ strategies. Aaron did learn verbal skills as well as some self-help skills; however this did not eliminate his aggression.

We moved to London in September 2009 so that Aaron could attend an ASD specific school. We have since been guided by Aaron’s teachers and Multi-Disciplinary team and have implemented the strategies that are used at Kestrel House School as best we can in a home environment. Some have worked whereas others Aaron refuses, e.g., Aaron refuses to look at a visual timetable at home but uses one at school, however implementing the various OT strategies has been very beneficial. We have communicated the different strategies to carers, and play schemes. We moved house after a year so that we now are living in a house with a fourth bedroom that is used as a calm room mirroring the school’s use of a calm room. This house was a nursery school previously so there is an enclosed playground / garden which is beneficial to Aaron who loves the outdoors.

Aaron has a range of challenging behaviours associated with his autism. These encompass every sphere of Aaron’s life. It is very difficult to explain in writing the extent of Aaron’s behaviour, however I have highlighted how Aaron’s challenging behaviour and autism manifests verbally, with regards to clothing, eating and sleeping, at home and out in the community and the various forms of Aaron’s aggression.

In this blog – I will include the section about Aaron’s aggression. I don’t normally like to go on about his aggression, but since we need to paint as black a picture as possible with all the facts… Well here it is…

This includes biting, kicking, hitting, pinching, hair-pulling, head butting, face squeezing and slapping. He also spits when angry.

We have tried various techniques, but none are working well presently. The aggression did reduce for a while when Aaron started medication (Risperidone), however it then increased. We have found that it then reduces when meds are increased again for a short time period, and then escalates again. At the time of writing 11th July – meds were increased about 10 days ago, aggression reduced, but this afternoon he has pulled my hair hard 8 times, and hit me 5 times. He also pulled the carer’s hair a few times today and hit her. This morning before school he pulled Ilan’s hair a number of times and mine, and hit us. Suzanne spent much of her time when Aaron was at home locked in her bedroom to avoid Aaron’s aggression.

Aggression is towards father, mother, sister, other family – young and old, our patient black Labrador, babysitters/carers, our and Suzanne’s friends, teachers, fellow pupils, and recently to random strangers in the street or park, old or young. We can no longer have Suzanne’s friends over for playdates or sleepovers since he hurts them. We no longer have friends visiting us since Aaron can go up to them and pull hair or squeeze their face really hard. The only people who visit us currently our Ilan’s father and his wife and Ilan’s cousin. We no longer have friends around with their children because we are frightened that Aaron will hurt the children. We also don’t visit other people’s houses with Aaron because he can hurt people and break items and we are constantly on guard so it is extremely unpleasant for us and causes significant stress.

Frequency: Daily – At times we have counted these and there have been up to 60 acts of aggression per person, per day.

Reason: Generally for not getting his own way, or anxiety, but also for no apparent reason at all, e.g., he has asked his sister for a hug, then has bitten her or pulled her hair or squeezed her face hard. As Aaron starts a different form of aggression we really try to understand the antecedent. The play therapist who is advising us at home, suggested squeezing Aaron’s hand when he tries to squeeze our faces and this has helped to reduce the face-squeezing. We have passed on this information to school and play-schemes. However Aaron seems to be pulling hair more now – we haven’t as yet found a solution to this. He has pulled my hair so hard that clumps of hair have been pulled out and there has been bleeding.

Physical Damage: These include: bruises that last for more than two weeks from hitting or kicking, bite marks, broken skin and bleeding, hair loss, red marks on faces from face squeezing that lasts up to 30 minutes, numerous red marks from hitting, including a red hand print on Suzanne. She simply was walking past Aaron while he was on a computer and said hi; he hit her so hard on her back the handprint lasted for hours. He has hit the side of my face so hard, my ear was ringing for over half an hour. I have calcium deposits on my shoulder which were in such a peculiar condition the shockwave therapist treating my shoulder asked if I had suffered major trauma. Although only 8 years old, Aaron is extremely strong and extremely quick.

Emotional Damage: A Psychotherapist- CAMHS (Special Needs) Team likened our stress and trauma to soldiers in a war zone or on a battlefield. We constantly live in crisis mode. At times days are better, however we know that it is inevitable that the aggression will resume. We wake up in the morning knowing that at some stage during the day we are likely to be hurt. This is depressing, debilitating, stressful and traumatic. We constantly worry that we are not giving enough or the right attention to Suzie, since we are exhausted from dealing with Aaron. However we are constantly trying to understand Aaron’s autism and wanting to help him to achieve his full potential.

Aaron aggression can be self-inflicted at times, he will bite himself, pinch himself, hit his head, pull his own hair, etc. Aaron has little concept of danger and has touched a hot iron (a number of years ago.) He has run into roads and been narrowly missed by cars. He has climbed over an indoor balcony in a house with a mezzanine level so that he was hanging over the edge. He has little understanding of stinging nettles and brambles. Aaron at times will cry and cry for over 30 minutes, lamenting all the items that he has broken or lost and all the people that he shouldn’t hit, or bite, etc. He is obviously at times deeply distressed by his own behaviour.

Aggression towards and with objects:

Aaron will hit and kick objects and throw items:

Glass: Aaron has used his bare feet to kick through a glass window pane of a door; he escaped with a minor cut. He threw a remote control through a glass window thus breaking it. Separately he has thrown a toy guitar through a glass window – again breaking the glass. Aaron also broke a window by throwing a metal watering can against it. By throwing things around the house, he has broken glass in picture and photo frames. He has also broken glass light shades.

Technology items: He has hit Ilan’s laptop keyboard and broken 2 keys. He has hit and broken computer screens, TVs, DVD players and video machines. Today (12 July) Aaron returned home from school with the glass on his new replacement iPad smashed since he had thrown it. (It is in a protective case and has a plastic film covering the screen). He has broken remote controls and computer mice by throwing them against walls. He has destroyed phones by dropping them into mugs of tea or by throwing them against walls, e.g. he has thrown Ilan’s iPhone against the wall and cracked the screen. This week, I was walking into my bedroom and Aaron suddenly picked up the phone and threw it at the wall; he missed my face by half an inch. He has thrown a remote control and narrowly missed one of Suzie’s friend’s faces. He has pushed me into a lake destroying an expensive camera and mobile phone. He has thrown videos around – against walls and cupboards, hence breaking his favourite videos and then he was distressed when they were no longer available for him to play. He also pulls out the tape from inside the video. (We now no longer have videos or a video player for Aaron.) He takes DVDs and CDs and bites them thereby destroying them or he simply breaks them in half in his hands. He also has no concept that DVDs scratch, so he is not careful with them. He has kicked the radio/CD player in the car so that the screen is broken.

Furniture: He slams doors, breaking them off hinges. He also lies down on the floor and kicks at doors thereby cracking the wood and the paint, as well as the door frames. He has thrown a wooden chair and broken it. Aaron throws things around rooms; he has chipped chunks of paint off cupboards, and doors and walls.

Kitchen: Aaron has thrown plates of food onto the floor – breaking the plates and making the food inedible. He has thrown glasses of water thereby breaking them. He can also throw cutlery – spoons or forks – in any direction. We have tried to put food and water in plastic containers; however Aaron may then refuse to eat or drink and insist on a plate or glass.

Other items: Aaron breaks toys, and books. He tears books in half, has broken a small sized guitar in half, and destroyed a drum. Aaron bites parts of toys, breaks pencils and crayons in half, and destroyed puzzles. He kicks the car and many other items.

General Throwing: Aaron likes to throw things out of windows of the house, car or over the garden wall into the busy street or onto the pavement. This includes books, toys, phones, remote controls, balls – big and small, scooter, plastic garden chairs and his iPad. By the time we went outside to try retrieve the iPad a few minutes later, it was gone. Yesterday a neighbour returned Aaron’s backpack which she found in the street (I had left Aaron alone for a minute to help Suzie). We therefore need to keep all windows closed/locked throughout the year when Aaron is in the house. This also means we cannot leave Aaron alone in the enclosed garden/playground outside, even for a short period of time, although this is not always feasible.

And to look on the bright side... well we have learnt to appreciate the calm times, we have met some amazing people along the path of helping Aaron, and we have learnt to always look on the bright side of life… tee-tum… tee-tum-tee-tum-tee-tum….

Next instalment – Verbal Challenging behaviour … with autism

Photo of Aaron: on the trampoline with broken edges, Aaron took the chair to throw it, Aaron's increased weight is due to the side-effects of his medication to reduce his anxiety/aggression...

Monday, 2 May 2011

A Seder with autism - a 'good news' story.

Meals can be challenging times for us – Aaron seldom remains seated for the whole meal which means one of us is also not seated since we often need to attend to his needs, or just wonder what mischief he can get up to! Friday evenings, as a jewish family, we spend with friends and/ or family either at home or at their homes for a Shabbat meal which includes certain traditions. These include lighting candles and saying blessings over kosher wine or grape juice and challah bread. Men and boys wear a kippah or yarmulke to cover the head when the blessings are recited. Aaron has decided that Friday night is “party time” since there are special hats and candles (after watching The Wiggles birthday party time videos)! He often blows out the special pair of candles – a real no-no in Jewish tradition –one is supposed to let them burn themselves out. Amazingly, he will only drink grape juice on a Friday night, never during the week. He has occasionally sneaked some crumbs of Challah bread into his mouth behind our backs, and we only know about this when he starts bouncing around on the furniture and being super-hyper, so now we are super-vigilant! (Aaron is on a GF/CF diet.) When we have the Shabbat meal at my father-in-law’s home, Aaron will spend some of the time while we are eating and chatting, watching TV in the study. However since the bathrooms are nearby, we check on him often to see that he is not playing with water, or squeezing out expensive soaps and lotions, or doing any other mischief he can find.

Passover, also known as Pesach, is a particular time in the Jewish year when there is a special meal. Certain foods are eaten during the meal, but more importantly before the meal starts we sit as a family and take turns reading the Haggadah book which takes at least 30 minutes. So for the Passover Seder meal this year we decided to be extra prepared so that we could sit and enjoy the whole Haggadah section with Suzanne – Aaron’s 11 year old sister and the rest of the family present – about 15 adults and children. We asked one of our babysitters to join us so that she would be able to keep an eye on Aaron in the study.

We pre-fed Aaron to be sure he wouldn’t get into a bad mood as a result of low blood sugar and then dressed him smartly for the occasion. He was in a good mood and walked in looking for the party! Davka, or in his own inimitable way, he sat beautifully between his father and great-uncle for the whole Haggadah! He seemed to think that it was a “show” and clapped at various points! (They do shows at his school.) He was a bit noisy at times making comments, which made it difficult to hear the reader. However, one priceless moment was while someone was reading a long passage, Aaron exclaimed, “That’s enough!” Throughout the evening our babysitter hardly saw Aaron, he was on his best behaviour.

One of my dear late naval father’s favourite sayings was, “Prepare for the worst, yet hope for the best.” Indeed, with Aaron’s autism we continually attempt to prepare for the worst while always hoping for the best. Autism in my view is a little like the British weather, predictable in its unpredictability! Wasn’t rain expected to shower blessings on the Royal couple this last weekend?

Thursday, 21 April 2011

A walk in the woods with autism

On the way to Aaron's holiday disabled play scheme today (Rollercoasters is kindly funded by fellow tax payers) we went a different route and passed a park he has been to once. "I want that! I want that park! (Repeat x at least 12)" To which we reply "No park now. First Rollercoasters, then park." He seems content with this.

He returns home mid afternoon, we cook a number of eggy bread and scrambled egg on toast (all GF/CF). Then he declares, "I want the woods (repeat x12)." I think it is a good idea to burn off his excess energy and off we go.

Except the spontaneous Mom decides to drive to the park we passed in the morning. As I look for parking, Aaron shouts "No park, I want woods!” unfastens his seatbelt and climbs over to grab the steering wheel. So off we go to the woods (Hampstead Heath).

This starts well. Aaron wants me to run and makes sure I do the right arm movements. He then, predictably, wets his trainers in the water fountain for dogs. We continue on his usual path however all his favourite mud holes have dried up in the recent good weather. We chant along to 'We are going on a bear hunt..." and he decides to remove his socks and shoes, probably uncomfortable since they are soaking wet and I put them in my large strange-shaped handbag (not my usual one which was stolen from our home while we were sleeping a few nights prior). He finds some mud to squish his toes in. I get him out of it quickly with a countdown method (5,4,3,2,1). We continue up a path - he rubs some dirt into his tracksuit pants. An elderly couple walk past, horrified expressions on their faces. I explain briefly, "He is autistic. He does strange things. That's autism!" They scuttle away, shaking their heads.

We arrive at a junction. I want to turn right, the shortest route back to the car. It is 5:45pm - Aaron normally has his anxiety and aggression reducing meds between 5:30pm and 6pm depending on how his afternoon has been and usually eats around 6pm. The route to the park and then woods through afternoon school holiday traffic has taken longer than I have expected. I produce a chocolate covered ricecake hoping this will be enough of a reinforcer (ABA therapy term) to entice him to go in my direction. Aaron lies on the ground and squirms, shouts, cries, hits out. I dodge the bite attempts. He manages to get up and run past me in his direction. I run passed him and attempt to block him again. Repeat of previous outcome. People hurry past, staring. Against all ABA therapy procedures I relent and let him go his route, thinking this is probably a route he recently did with his Dad and in his autistic mind he needs to complete the same route.

I try to get back into an ultra calm, cheery, adult state of mind (as recommended by my therapist) - he picks up on bad vibes quickly - and we go along an unknown, to me, path and update the hubby via phone who confirms this is a route they did recently and that I should try gently steer him in the direction I want him to go....

It's a very pretty route going through woods looking at a lake below Kenwood House. We near a bridge to go over the lake and I start with, "there's a grumpy old troll who lives under the bridge (from Dora)". Aaron picks up on the lyrics. We 5,4,3,2,1 through more mud and I gently steer him in the shortest direction to the car round the other side of the lake onto Kenwood's grassy slopes - the beautiful scene of many outdoor concerts, other family's picnics and currently walkers, photographers, and people enjoying the last rays of early summer sun (it is April).

Aaron tries to climb the railing encircling the lake. I succeed in discontinuing this behaviour. He then wants to peepee and pulls down his pants - I manage to steer him to a tree and stand behind him to block the view of any people who may be offended by this.

And this is when the walk is no longer just a 'normal' walk with Aaron. He decides he doesn't want his pants on anymore. Of course I, the ex-always prepared Girl Guide have spare clothes for him; however they are in the car.

I decide that I am not walking across the well populated grassy slopes with Aaron in just a short bright orange T-shirt. I think you can imagine the discussion that ensues.. Me: "First car, then other pants. Keep the pants on!" Aaron, "I want pants off! I don't want pants!" All the expensive therapy and school has taught him to express his needs. I offer the chocolate covered ricecakes or crisps again - see I am prepared with reinforcers / food so that he doesn't have a sugar low! Aaron is not interested. I rack through my brain and memory banks for a solution to the current situation. Shoulders! A previous time his dad carried him on his shoulders away from a tantrum and to the car, however I have not carried him for awhile since he has put on so much weight as a side effect of his meds and my osteopath says it's a real no-no. "Aaron want shoulders?", I ask tentatively, haunched down. He replies by walking behind me and climbing. I grab my handbag which had overturned and spilled when I had offered him the useless reinforcers and stuff the items in quickly while 30+kg of Aaron is trying to climb on top of my shoulders.

I trudge up the staring slopes with squirming Aaron loudly voicing that he wants his pants off. I try look on the bright side and think this is a good workout and will help with losing my depression induced weight gain.

Finally, the welcome sight of the car containing the spare pants and a way to get home to meds and assistance from the long suffering husband/father. I gently unload Aaron and reach into this unfamiliar bag for the car keys and can't find them. Aaron removes his pants and starts kicking the car stating "I want car! I want the car!" I empty the contents of the bag onto the pavement and my phone rings - "Are you alright?" "No, HELP!" I cry.

On the bright side, the patient father in law was in town and rescued Aaron and took him home, I found the car keys where they had been spilled earlier, and I managed to sit for a few minutes on a bench overlooking the London skyline and noticed trees in beautiful blossom.

Date of event: 20 April 2011
Aaron aged 8
GF/CF = Gluten Free, Casein Free
ABA = Applied Behaviour Analysis
Hampstead Heath / Kenwood