Following on from my previous blog (‘Pre diagnosis behaviours that raised alarm bells’), which I’m pleased to say resonated with some of my readers and are going to go armed to their next appointment, I thought it would be useful to jump ahead 6/7 years and give an insight into where we are today.
Whilst many of the pre diagnosis behaviours are still present, it was at the age of approximately 6 years old that behaviours really became to hit an all time high, particularly the defiant behaviours, volatility and physical aggression.
As I am writing this I found myself going off on a tangent and writing about all the bits in middle from pre diagnosis to date, so I will try and stay on track and just share about the here and now!
I’m going to keep the same basic format as I did in the previous post for ease of reading and hopefully ease of spotting anything that maybe relatable. So, here we go, behaviours now at 10 years old:
- Finds social situations difficult, particularly those where she doesn’t feel in control which can result in volatile behaviours
- Struggles with sharing the attention of primary care givers (ie myself and her Teaching Assistant) with others. This often causes a frustrated and angry response as well as the ‘nobody cares’ feelings
- Often accuses others of being angry with her, despite this not being the case, and will question ‘so you are calling me a f***ing liar then?!’ if the individual tries to explain that they are not angry with her
- Nothing is ever her fault and really struggles with taking responsibility for her actions even something as simple as breaking something in anger but not accepting it was her fault. It would be someone else’s fault ie because they had made her angry
- Sometimes denies getting angry despite having just had an incident
- Blames her behaviours on others ie it’s my fault I made her angry (despite the reasons behind making her angry are unbeknown to me)
- Feels irrationally persecuted by others
- Very controlling and demanding
- Constantly hungry
- Health wise, any ‘worry’ will quickly escalate ie if she has a sore throat, this will be followed with many questions (escalating in turn) like ‘do I have tonsillitis?’, ‘do I have to go to the doctor?’, ‘will I have to go to hospital?’, ‘will I need an operation?’, ‘will I die?’ – all in the same breath
- Needs my constant attention, often unable to do things on her own or independently
- Always wanting/needing to know what’s happening ie after school/at the weekend/after we have done whatever
- Simultaneous demands ie needing help with three different things all at the same time
- Becomes agitated or indeed angry if asked to do something for herself, even if it’s something she is more than capable of doing herself
- Can become manic which includes laughing uncontrollably about something no one else finds or can work out what’s amusing, being silly, being inappropriately loud, grabbing me inappropriately
- Mood can switch in an instant, sometimes without any obvious trigger
Communication and Language
- Language is colourful to say the very least! You name it, I’ve been called it as have others ie sister, grandma, other students and staff at school!
- Still massively struggles with not interrupting conversations and will often get openly angry if others are talking – even taking a phone call is never without constant interruption
- Unsure how to start and maintain conversation if the conversation isn’t about herself
- Finds it difficult reading or understanding social situations and can often be inappropriate
- Is getting better at talking about what is going on for her and how she is feeling, but still occasions where she will just shut down
- Still is only comfortable wearing sensory socks at £6 per pair!
- Leggings and shorts are still the go to clothing of choice
- Picking of skin is still a big issue and has had self-created lesions of some description now for approximately 8yrs
- Thankfully the constant chewing of toe nails at every opportunity appears to have stopped
- Current ongoing (for months) obsession is always having to have someone round/over to the house. This can lead to meltdown if this is either not allowed or wanted
- Spending/buying – very obsessional with money, always wanting more, nothing is enough (to the extreme), impulsive with spending, constant requests and is relentless – usually resulting in volatile behaviours
- Individuals – not always in a positive way – ‘targeting’ in a negative way ie sister, myself, a particular student at school
- Parties/celebrations/events – plans in finest detail and has to buy and make things to the extreme (sometimes months ahead) despite struggling with the actual event
- Eating – compulsive, obsessional and impulsive with food
- Males – can very inappropriate which makes her vulnerable
- Old people – instantly takes a dislike to older people (over 50yrs apparently)
- Black people – this I came to realise was a sensory issue when it finally came to light recently that they were disliked ‘because they smell different’
- Death/dying/operations – mixed obsessions from fear of these but mainly of interest
- Getting pets – will plan to the finest detail, despite being told we aren’t getting, for example, a dog, horse or donkey
- DIY stuff ie slime making – using everything in the house again and again despite unsuccessful previous attempts
- Any ‘project’ has to be done to the extreme
- Character obsessions (which went on for weeks/months) ie:
– Mermaid obsession – convinced she was a real mermaid and got angry if challenged (by peers)
– Harley Quinn – making and wanting to buy all the accessories, making up herself up to look like her etc
– Wolf blood – convinced she is a Wolf Blood – obsession ranges from colouring wolf pictures, buying and making accessories, convincing people of her ‘transformation’, getting people to join her ‘pack’ (but this included carrying out rituals)
- Anything that anyone else has got – she will need to have ten fold – but this may be more about the buying/spending
- My daughter has also recently started a new behaviour where she does a count down for things ie even when the traffic lights are changing colour
- Verbally abusive. Will insult an individual, swear, goad
- Extreme levels of volatility results in screaming, shouting, swearing, name calling, throwing things, damaging property and often goading behaviours
- Throws objects at individuals with the intent to harm
- When younger her ‘go to’ behaviour was biting (this lasted about 3/4 years and I was rarely bruise free during this time) however, the ‘go to’ behaviour is now grabbing my forearms, digging her finger nails in and gauging out skin as well as kicking
- Physical violence includes kicking, hitting, pulling of hair, pulling glasses off of my face, pinching, scratching, barges past (deliberately knocking into me)
- Spitting is very prevalent at the moment. This may include spitting in my face, spitting on the walls, carpets or furniture
- Trashing of the environment and damaging property. Having moved house only a few months ago, damage to date includes: fridge/freezer and worktops dented several times with a hairbrush, holes in walls where things have been thrown or headboard on bed kicked repeatedly, phone/ipad/lamps/mirrors/remote controls smashed, holes in lino where things have been thrown, curtains pulled down, clothes airer bent, bannister pulled off of the wall, window sills and doors dented
It’s these behaviours that I find most challenging to manage.
If I am brutally honest, I am not coping so well these days when I am physically attacked as I find it extremely difficult not to get emotional! Having lived with extreme levels of violence for 5/6 years now, you would have thought I would have mastered the art of keeping my own emotions in check! I’ve thought about this a great deal recently and I believe that the reason I am struggling with this particularly is because my daughter is now of similar height to me but quite a bit heavier than me, I feel vulnerable! In the moment, I no longer see my child struggling with regulating what’s going on for her, instead I now see an adult (in size not age) coming at me and hurting me.
- pull handfuls of her own hair out
- bite herself
- gauge skin out with her finger nails
- injury herself even with a pencil
- cause suicidal thoughts (this also occurs when she is feeling really remorseful)
I have had a ‘sharps box’ for several years now that means that all knives and scissors are no longer easily accessible, to lower the risk of harm to herself or others.
- Needs constant reassurance
- Feels like she is a ‘horrible person’ particularly after a big incident
- Often feels so low that she doesn’t see the point of living
- Low self-esteem is reinforced by the inability to maintain friendships
- Being over-weight massively affects her self-esteem and will often have negative comments about her appearance
So why are we experiencing all of these behaviours?
I have come to learn, during and post diagnosis, that the vast majority of these negative behaviours are triggered by my daughter’s Autism, PDA and other mental health conditions. These conditions cause extreme anxieties, obsessional/compulsive thoughts and emotional dysregulation (the inability to manage her own emotions) – none of which she has any control over! This is heart breaking not only as a parent but also for her. We are currently under the Maudsley hospital who are working hard to try and get the right medication combination for her which will hopefully reduce her anxieties and stable her mood.
She is such an amusing, kind, loving, caring, polite and considerate child when her anxieties and mood are stable. I truly can’t wait for us, as a family, to be in a better place where all these heart warming traits shine through!
Likewise in my previous post (‘pre diagnosis behaviours’), if there is anything here that you can relate to or that raises concerns for your own child or someone you know, then please seek professional advice.