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...