Festive Challenges and Autism Tips

Chrissy aged 9 with her sister, Alex, years before she was diagnosed with autism
Last Christmas was very difficult for Chrissy. The self-injurious outbursts kicked off on Christmas Eve then reached a peak during Christmas Day. She had 8 major outburts in 24 hours - including a hair-raisingly violent one during our 2-hour drive to her aunt's. (Her sister and I arrived in tears). Chrissy fluctuated between full-on screaming, rolling around on the floor and self-injuring, and being out of it. It was, as you can imagine, very disruptive & distressing for Chrissy herself & the 13 other family members around her. Because she was stripping off, we had to keep her hidden from her younger cousins' view - an almost impossible task.

Previous Christmases have been more Jeckyll & Hyde than last year's - outbursts interspersed with lovely times rather than lethargy. The picture above shows Chrissy enjoying herself but on & off throughout that day she had been clawing at her face & around her eyes. At one point, Ian had taken her outside in the cold & sat quietly with her for a while to calm her down & give everyone respite. Not all Christmases have been so difficult. Chrissy's autism fluctuates unpredictably like her moods, and appears to have got more severe with age.

We're hosting Christmas this year, which will make it easier to minimise triggers & manage outbursts. We'll celebrate Christmas around Chrissy & she can choose which parts to join in with. I won't involve her in the present-opening scrum, nor will I invite her to join us for Christmas dinner. Chrissy time is slower than our time. Once she's figured out that there's a feast at her disposal, she'll wolf down her meal in peace long after we've cleared the table. We'll also try some National Autistic Society tips to support The Diva through her festive challenges. Wish us luck! http://www.autism.org.uk/living-with-autism/at-home/coping-with-christmas/ten-ideas-for-a-happy-christmas.aspx



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'How I'd like my Life to be' by Chrissy - A #Specialsaturday Post

A chance call from the Challenging Behaviour Foundation & a chat with two parents of other adults with complex needs have forced me to think long and hard about the journey we’ve been on with Chrissy over the past few years.

After 27 years of fighting to get Chrissy what I think she needs I’ve become entrenched in trying to sort out failings in the systems designed to support her. Am I failing Chrissy myself because I’m too exhausted and overloaded with information to think clearly anymore? It got me thinking… Have I lost sight of how she would want to live her life?

If she could speak for herself this is what I think she’d say…

Chrissy:
‘I’d like to live in my own home with all my own things around me, including my computer, my DVD’s, my foot spa, multi-coloured hairbands, books and favourite pictures. A garden that I could go and sit in on sunny days would feel very calming. I could blow bubbles and play ball out there too. I’d have my own chair and table outside with a sun umbrella for hot days so I could draw or watch my portable DVD, or sit quietly listening to the birds and looking at flowers with my favourite drink or snack in front of me. It would be fantastic if the garden was big enough for me to ride around in my trike, or close to a safe space where I could ride it with supervision. It musn't be too overlooked because I need my dignity respected when I lose control of my emotions & strip off on the lawn!

My home must be close to my family’s. I stay with them overnight once a week and would love to see them even more often, either at their home or mine for shorter visits. No one else could evict me or take my home away from me - it would be mine for as long as I needed it & furnished with my needs in mind. I wouldn't be forced to move to any more unsuitable places where there's no bath, nothing to do, or a string of strangers to care for me who don't understand my needs.

A wall-chart with removable stick-on symbols to help with my daily routine and planned activities for each day so that I'd have plenty of interesting things to do when I’m feeling up to it would be nice. I'd also like daily home-based activities available as I can’t always get out and about.

A bath with a rail so I could climb in and out more easily is a must. Showers are a definite no-no; the spray on my skin feels horrible. My body reacts to the world around me differently to most people's. Sensations that you don't notice, like a breeze blowing in my face, or sand under my feet feel very uncomfortable but broken bones & missing toenails don't seem to bother me. So you need to keep an eye out for unexplained swellings or hidden injuries. I have problems with balance & spacial awareness, & take my time walking on uneven surfaces, around obstacles or up & down steps. I can’t regulate my own body temperature well but fans on hot days & wearing gloves indoors if my hands are cold help. If I ask to wear a coat, scarf and gloves on a hot summer’s day, indulge me - they won’t stay on for long.

Sometimes I appear to have understood what's said to me but, actually, I may not have done; I need lots of time to process information. I can be helped through difficult times by having pressure applied to the backs of my hands, a cuddle, sitting with my weighted blanket on my lap or a massage. If an outburst threatens, I sometimes respond to tried & tested distraction strategies or basic sign language and symbols to de-escalate my distress. You may find it helpful to try & identify a trigger so it could be avoided or minimised in future. If I lose control, I don’t like other vulnerable learning disabled adults around to witness it & react with their own disgust, fear or anger. I can’t cope with other people’s challenging behaviour around me either. My own problems are more than enough to deal with.

Consistently applied behaviour support approaches are vital for me to remain as stable as possible, along with verbal communication, appropriate symbols and sign language. Any staffing or routine changes must be carefully planned and should only take place if they benefit me, & for no other reason. I need help to dress nicely, take care of my clothes & other possessions, shave my legs, keep my hair untangled and my teeth clean. Like most women, I lap up compliments & love to look nice. I especially need help to ensure that my diet is healthy and that my weight is kept under control because the medicines I'm on make me ravenous & food-obsessed.

On good days, I’d like enough support to go out for a walk, maybe to the local shop, or a drive to a garden centre or park. On bad days, I need space to rest undisturbed in my room, or have a good scream. If I'm hurting myself, I need to be kept as safe as possible, with carefully positioned cushions or sharp edged furniture moved. I'd need a safe area in my home, to which I can be directed or carefully moved with planned physical interventions if necessary as a last resort.

If I say I feel sick or start looking vacant or smacking my lips, look out for an epileptic seizure, & help me sit down somewhere. Even short seizures sometimes wipe me out & leave me confused & disorientated, so I may need a sleep to recover.

The local GP and learning disability team must be fully briefed about my condition and able to respond in emergencies – an appointment several weeks ahead is no good as my condition is very changeable and unpredictable. They'd need to be open-minded about what works for me as I'm extremely sensitive to many medications & they can sometimes induce rare adverse side-effects.

My senses get overloaded by any clutter around me at the table when I’m eating or doing an activity. I’m compelled to have two of just about everything from tissues to dollops of tomato sauce but cutting one slice of toast in half or ripping a tissue in two is fine. If I ask 100 times what’s for dinner, try to be patient & distract me but be firm with me, & please don't overfeed me to sedate me. Oh, just one last piece of advice for now - if you don’t make my bed covers all square and neat around me and turn my pillow (I call it ‘cushion’) over when I ask, I may shout at you and throw a strop.

Yes, I know I'm a diva but I have to be to survive in your world.'

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The Opiate-Excess Theory & Naltrexone

On Tuesday I had an emotional meeting with Chrissy’s psychiatrist and psychologist. My main concerns were that progress Chrissy has made in hospital has plateaued and that her self-injurious behaviour is worse than ever. I have described this behaviour in previous posts so won’t go into details again here. The following link gives excellent information on self-injury, covering biochemical causes that we believe are the predominant causes of Chrissy’s self-harm.

http://www.autism.com/ind_self-injurious_behavior_treat.asp

When Chrissy was 14, she had been prescribed low-dose Naltrexone, an opioid-blocker normally used in higher doses for people with drug and alcohol addictions. Some people with learning disabilities, including autism, may gain a ‘high’ from self-harming as the body releases endorphins, which bind to the same receptors as heroin and morphine. Naltrexone removes the ‘rush’ generated by self-injury, so there is no longer anything to gain from it. Then, Chrissy’s doctor had been very enthusiastic about Naltrexone – an added benefit was that side-effects were thought to be minor and only occur in about 10 per cent of people.

After the introduction of Naltrexone Chrissy’s outbursts became shorter with minimal self-harm. Two years later, a different medical team, who had no other patients on Naltrexone, gradually withdrew it to see if it really was having beneficial effects. Chrissy’s self-harm escalated dramatically & when Naltrexone was re-introduced the self-harm and screaming outbursts reduced significantly again.

Five years later, Chrissy’s platelet count dropped dramatically and she was taken off Naltrexone and Prozac – as they were thought to have caused this rare adverse effect over time. It’s such a shame that what appeared to be ‘wonder drugs’ for Chrissy had to be withdrawn. The self-injurious behaviour and prolonged outbursts came back with a vengeance and no effective substitute has been found since. We’d already tried the gluten and casein free diet as these proteins, mainly found in wheat and dairy products, can also have an opioid excess effect on susceptible individuals. The diet had made no difference to Chrissy’s behaviour and, again, adverse effects had meant we’d had to discontinue it – she became anorexic.

Now, we are in the hands of Chrissy’s medical team. We’re not looking for miracle cures – just for Chrissy to get her life back.

Animals, Bedtime Rituals and Autism

Just Chrissy & I this evening as Ian, her stepdad, has gone to pick up my youngest child from uni. I managed, by a combination of knowing when to be firm & when to indulge, to keep the peace until 10pm.

Anticipating what Chrissy will do next is exhausting. I left her looking at 'toast & jam' in the kitchen equipment pages of her Argos catalogue to get something from another room. All was quiet. Then she came in & told me she had 'kicked' the cat, 'hurt' the cat, & said something I couldn't grasp about the cat's tail. It didn't bode well.

Our two cats were nowhere to be seen for a while. Then they eventually slunk back into the house looking wary but unharmed. Chrissy either ignores them, notices details about them ('look at cat's necklace' when it had a new collar) or torments them when she gets the chance, sometimes playfully, sometimes suddenly pulling their tails & alarming them. She knows it’s wrong on one level because she grasses herself up – she’s totally guileless – but I suspect that she is also entertained by our reaction. When she's in that mood the cats normally give her a wide berth & she may have been saying she'd hurt them before thought became deed. She sometimes says she's done something, ie wet herself, when she wants to do it, ie go to the toilet. She is confused by tenses & sequences of events.

Chrissy was intent on further mischief by then & went into the kitchen to demand 'grey cup,' which means a glass tumbler. I use plastic cups as she's prone to throwing them when she’s agitated. My refusal to let her anywhere near a glass tumbler resulted in her first outburst of the evening. It was relatively mild, lots of guttural roaring, hair-pulling & hand-biting - it didn’t progress to stripping off & running around the house, as it did last week. She was over-tired I think & undergoing meds changes that may be making her feel strange.

Once she calmed down I managed, aided by symbols for 'clean teeth' & 'sleep' to lure her upstairs to her bedroom. We then had a great fuss over her 'cushions' - she asked me to turn them over several times - & her blanket. I haven't figured out what the issue is with her blanket. She kept saying ' do my cover.’ I pulled it up & tucked it over the top of her duvet so she could hold it, & settled it around her but she kept on. 'What exactly do you want me to do with your blanket?' I demanded in exasperation. 'Make it square,' she said. I did my best to comply but I'd made it square & neat over her anyway. She eventually settled down & I asked her if she was happy with it. 'Yes,' she said, allowing me to kiss her goodnight & leave her room.

Now I can hear her in bed repeating 'do my cover.' This happens during the night too. I’ve just gone through the whole pantomime again with her, tucking it this way & that, & she’s still repeating ‘do my cover/do my blanket.’ Bloody maddening. Need a solution....

The Royal Wedding through the eyes of someone with autism

"Is she going to bed?" Chrissy said when I asked what she thought of Kate Middleton's wedding dress! Chrissy watched the royal wedding highlights with me in the evening & stayed reasonably engaged, cuddling up to me on the settee, throughout. She seems drawn to churches & thinks all priests & religious men in robes are called 'John' because Father John was one of her favourite people at St Elizabeth's, Much Hadham, Herts., a fantastic termly boarding school run by nuns that she attended from age 14-19. She enjoyed going to church at St Elizabeth's when she was calm enough to attend.

I found myself in floods of tears watching Kate Middleton's proud dad walk her up the aisle - it hit me anew that Chrissy would never get the opportunity to marry or fall in love. I have another daughter who has those choices in life but my grief wasn't about me, it was about Chrissy & the opportunities denied to her.

At home here yesterday, Chrissy kept remarking on the sound of bells that rang out from our local church. It was hard to tell whether she enjoyed the sound or found them irritating. Chrissy can't express how she feels. She has a wide vocabulary but much of it is learnt, although she can appear to use relevant phrases, such as 'it's sunny outside.' Trouble is, she sometimes says that when it's raining & overcast. If you check her & ask: 'Is it sunny or raining,' she usually gives the right answer - she just trots out repetitive words & phrases without thinking.

We have solved the bedtime problem touch wood :~) The hospital told me that Chrissy has two pillows there. I tried two at home & she was fine. It's interesting that she didn't realise she needed two pillows to feel comfortable, as she will often ask for two of everything else. Such a simple & easily avoidable misunderstanding that had been causing so much aggro! It is very easy to over-estimate Chrissy's abilities to express her needs because she appears to have better communication skills than she actually has. If we had given Chrissy the choice of one or two pillows, she would have chosen two. We just need to become better detectives I guess.

The sensory overload of a hospital appointment

Chrissy appears to have no concept of time but she somehow senses if she hasn't been home for over a week. Last weekend I was away so didn't bring her home as usual. When I phoned the hospital to finalise details of today's appointment with Chrissy's neurologist, a nurse told me that on Saturday, she had donned her hat, coat & gloves & demanded to come home. When her request hadn't been granted she'd become very distressed. So, feeling guilty, I decided to bring her home today after the neurology appointment, instead.

The appointment itself went smoothly. Chrissy veered off into a shop inside the hospital for a diet coke & briefly interrogated a tiny child she was curious about but we didn't have to wait for long to be seen. The neurologist was well-informed & thorough, & I was happy with the meds change she advised. The two nurses that came with us brought the car as close as they could to the entrance so Chrissy didn't have to walk very far with the wind blowing her face - something that makes her react as if she's under attack. She moaned a bit & full-on sobbed at one point but all in all she coped very well.

The reaction came later back at home!

As usual I'd organised everything beforehand so that I could give Chrissy my full attention - I'd even pre-cooked tonight's dinner. Unfortunately, Chrissy wanted her sister's computer even though she now has her own laptop. After screaming & throwing herself & other objects around for 10 minutes she eventually calmed down & played on her laptop at the kitchen table. Another outburst kicked off when her lunch came - meal times & food are often triggers. Eventually, when I added an egg & tomato sauce to her tuna sandwiches, she settled down. Simple solutions but rarely obvious ones....

Dispelling myths: autism and showing affection

People with autism are not all 'trapped in their own world.' Many do show affection, but may express it atypically and on their terms. They may suffer sensory overload - and find hugs overwhelming - unless they initiate them. When a person with autism does form an attachment to you it can be draining but the rewards are huge. Our daughter loves having her hands massaged and hair gently played with, and being squeezed and squeezing back. She also enjoys horseplay and light rough and tumble. Today when I was clearing away the breakfast things, she approached me out of the blue, smiling with her arms outstretched for a cuddle and said 'I love you much.' When she hasn't seen me for a while and spots me coming, her face flushes with joy and she runs towards me. Yes, she will go to anyone who offers her something she wants - like chocolate - but she will only spontaneously approach a chosen few with such rapture.