Sleeping with flowery curtains & the awesome power of autism

Lively banter between Chrissy & step-dad, Ian, last night. A lion in her DVD cartoon roared, making Chrissy laugh. Ian asked what the sound was. 'Evil' Chrissy said. Breadth of vocabulary astonishes us at times. How did she know that word & relate it to roaring? She will stop in her tracks to point out tiny details in a room that we'd never notice, such as the 'Home' written on my Homepride biscuit tin, or a miniscule spider hanging from a big window, & put the correct name to them.

When we put Chrissy to bed, she said she wanted to change her 'cushion' (pillow). I turned it over a couple of times, which usually does the job, but she wasn't having it. Her eyes darted around her bedroom, and alighted on a pair of her old flowery curtains in a pile in the corner. "Want flower cushion," she said. Ian showed her that they were in fact curtains but Chrissy insisted on having placed around her pillow before she would settle.

This morning it was 'I want two' of everything from tissue to toast. We tear tissue in half & cut toast up, & she's satisfied with that. Light switches went on & off, every door around her was shut until she felt calm enough to take her tablets and eat her breakfast.

During all Chrissy's waking hours her life & the lives of those around her are governed by the powerful force of her autism.

Getting our daughter back..

After the sudden move, I'd lost confidence in the quality of care Chrissy had been receiving. Doesn't take much. Trust had been shaken so many times by past events pre-hospitalisation. However, today, after a care programme approach meeting, my confidence was restored & my fears allayed. The meeeting was very well-planned & well-attended. I was impressed & moved by the obvious affection hospital staff had for Chrissy. It was clear that all attendees wanted the best for her & several health professionals said how much they enjoy working with her. One of her nurses added that they had all learned so much from Chrissy. I can't tell you how good it felt to hear that. We still learn so much from Chrissy too! I know how exhausting Chrissy can be but it's wonderful to hear that I'm not the only one who sees the rewards. The professionalism & attention to detail by the medical team in preparing their report was second-to-none. It's in stark contrast to all the meetings we used to have pre-hospitalisation with hidden funding agendas where Chrissy's healthcare needs were denied. I won't let it lie. There are too many vulnerable adults out there, with complex needs, like Chrissy, who don't have anyone to fight for them.

After the meeting we met with the CEO to discuss the problematic move. He was open & apologetic about what had gone wrong. I feel reassured that lessons have been learned, & this incident will not be repeated. I was reminded today how far Chrissy has come since she was first admitted in January 2010. We still have blips (xmas!) & there is still lots more work to be done but we are seeing light at the end of the tunnel. Chrissy is coming back to us...

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.

Could you be a woman living with undiagnosed autism?

I blogged about Shona in January. Her story in Essentials Magazine came out today. 32-year old Shona has a 1st class degree in genetics but finds it difficult to hold down even basic admin jobs. She is attractive with a big personality but has problems in her relationships with family, friends & boyfriends. She has always felt alone & at odds with the world. Six years Shona was diagnosed with autism spectrum disorder (ASD). Autism in women is an under-researched area & many women wait years for a diagnosis or are wrongly diagnosed with eating disorders or other problems. 10 males to one female are referred for diagnostic assessment for ASD; females present differently to males, with less obsessional and pedantic traits, which means autism is less likely to be suspected. Many women may be living with undiagnosed autism like Shona was.

How autism widens our view of the world

I've been agonising over how, for years, before our daughter got her diagnosis, we misunderstood her autistic behaviours as 'naughty.' We acted like parents of typical kids, setting boundaries and refusing to give in to our daughter's 'unreasonable' demands. Our actions resulted in lots of unnecessary frustration and anger on both sides. One way or another our daughter would have to learn that she couldn't get her own way by having tantrums.

Now, I understand that her demands are driven by obsessions and compulsions that she can't control. If thwarted, she becomes overwhelmed by distress & anxiety. The resulting outbursts look like severe temper tantrums. Some of her behaviours may seem totally unreasonable, for example one day when our daughter seemed particularly calm, I took her to a local pub on a sunny Saturday afternoon. It was very quiet and I thought she'd enjoy a coke in the gardens. When the barman poured her diet coke from a tap she started flapping anxiously as she usually has it in a bottle. I try to be one step ahead but you can't think of everything! I explained the situation & the barman unearthed a bottle with a metal cap, different from her usual one with a plastic lid. It was enough to tip her over the edge. She threw herself on the floor, screaming & pulling her hair. I stood by and waited until she was calm enough to be lured into my car with a promise of her usual 'coke-from-a-shop' at home. Her thinking is very literal & concrete, & no alternative would do. I try to keep her environment as consistent & structured as possible. I've learned that any tiny deviation in routine can result in chaos, but by deepening our understanding of how people with autism see the world we widen our own view.

Funding wrangles continue over disabled daughter's care

I've blogged about this before (see below). Received an update today that the funding dispute remains unresolved and various assessments will be done for a 'high level meeting.' 1st a 'standard' self-directed support questionnaire, then an in-depth 'care funding calculator assessment' to allocate my daughter a 'notional budget.' Scary stuff! I can't help feeling sorry for local authorities, who must really be feeling the pinch now. The system is flawed. Is it fair for one local authority or NHS trust to pick up the bill for people with severe and complex needs? Shouldn't there be a national budget for such cases?

For the last three years I have been fighting to get my 26-year old daughter, who has a rare chromosome abnormality & autism, the expert help and support she needs. Residential homes have said they can't manage her behaviours, expert support services have shunned responsibility and she has been pushed from one local authority to another throughout the south of England. Three times in the last year alone I have had to litigate to try to resolve the situation. Her PCT have said that she needs a fully staffed local supported living single person service – acknowledging that residential services can't provide what she needs. But who will pay? My daughter's funding has been a wrangle between two local authorities – one arguing that her predominant need was social care provision, the other arguing that her predominant need was for health care and, in addition, they couldn't agree which area’s authority was responsible. In January last year, after litigation, one authority was forced to accept 100% responsibility for funding her health care so she could get the hospital treatment she desperately needed. This funding agreement was given 'without prejudice' & the dispute continues. We have been waiting for over 18 months for a continuing care assessment to be completed - it should take about two weeks. These delays and disputes are a means for responsible authorities to delay or avoid paying for care. It means that our daughter has not had any involvement from a care manager for the past few months as the authorities continue to shunt responsibility betweeen them - I have done their job for them. She has suffered so much and we are fearful of the future - what happens when she leaves hospital? Our much-loved, complex & vulnerable daughter has become invisible in the midst of all the funding wrangles. We can only hope that she will regain her quality of life at the end of all this - but what happens to the vulnerable that don't have families to speak for them?

Cuts in services for the disabled

Attended a Mencap Big Cuts event today. Received loads of useful advice about fighting the cuts. Met other parents, who, like me, are frightened of what the future holds for their disabled children. What's happening already is bad enough - cuts in Mobility component of DLA & Disability Law Service, respite centres being closed down etc. Government plans to make personal budgets compulsory for people with disabilities are the most scary. Disabled people will be allocated a budget based on their support needs then, if they have the capacity, make their own decisions on how it's spent. In many cases the task will be vested to families or, if they have no family able to do it, outsourced to 'brokers.' Essentially, the government would privatise learning disability services like they did pensions - & look what happened there!! Although many charities, including Mencap, support the principles behind personalisation - giving people choice & control - there is concern that personal budgets would be inadequate & used as a 'stealth cut' to reduce the amount of social care provision made. Navigating the system will be be more daunting in some cases than others - hitting the most vulnerable or those with additional complex health needs. Not a prospect I'm looking forward to :(