Autism & Xmas

Xmas was ruined by our 26-year old autistic daughter's outbursts. We did all we could to minimise changes to her routine but they kicked off on Xmas Eve & reached a peak late Saturday afternoon with one lasting nearly an hour. Total 8 in 24 hours. We still don't know what drives them & triggers are unclear & inconsistent despite exhaustive psychological approaches being used. She's spent a year in hospital now & I feel as though we're no closer to stabilising her. If only she could tell us what she's feeling/thinking :(

Legal services for people with disabilities

On 8 October I blogged about the DLA takeway. The charity, Contact-a-Family were calling for rules stopping the mobility component of disability living allowance after 84 days in hospital to be scrapped. We found ourselves in this situation & appealed against the decision to stop our disabled daughter's DLA because she still needs help with getting around outside the hospital. She is there for psychiatric assesment & treatment, & attends medical appointments outside the hospital, & comes home most weekends - explained in my previous blog: http://jgregorysharingsstories.blogspot.com/2010/10/dla-takeaway-for-disabled-children.html

We sought the Disability Law Service's advice over this & their solicitor advised us how to proceed witih an appeal, & said that he would take it up from there. Today, I received a reply from the DLA asking us to attend a Tribunal to discuss their decision. As advised, I returned to the Disability Law Service for their continued support but they say now that they can't help any further because the Legal Services Commission will not allow them to take on any more cases. They advised me to find a 'local solicitor.' I understand why legal aid should not be granted willy-nilly, but surely people with disabilities, particularly those with autism and complex needs, need specialist representation that is hard to find outside the Disability Law Service. Will we have to pay for our adult daughter's legal representation ourselves or will I have to be my daughter's legal representative? Scary :(

The press & beating autism stories

I recently read yet another misleading & facile 'beating autism' story in the national press. This time it was about a boy with autism who learned to show love to his mum after getting a cat. The article stopped short of saying he'd been 'cured' but the implication is that by finding a simple key you can 'unlock' someone's autism. If only! I don't want to deny parents hope but unrealistic expections can lead to fruitless & soul-destroying searches for non-existent cures or treatments, & add fuel to the autism industry. (See my previous post about the autism industry.) There is evidence-based help & support out there. Parents should not feel guilty if they can't achieve the happy-ever-after result implied by these fairy stories.

How the system fails vulnerable adults

For the last three years I have been fighting to get Chrissy 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 taken out litigation 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 this 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?

Chemical coshes for dementia patients

Reducing the use of anti-psychotic drugs for dementia patients can only be a good cut to make surely? Yet on ITV News' Facebook wall everyone's complaining about it! They're missing the point. See my previous blog about the autism industry, in which I say that anti-psychotics are used as a one-size-fits-all drug that don't work for everyone & cause nasty side-effects. They can cause early deaths in elderly patients too. Some dementia patients are being given chemical coshes because they wander a bit & there aren't sufficient staff to cope. This happens to other vulnerable people in residential homes too. My daughter was sedated AS A PRECAUTION because another resident kicked off & staff worried they wouldn't be able to cope if my daughter started too! I found out what had happened because I'd come to take my daughter home for a visit. It resulted in a Safeguarding Alert, which is a meeting to discuss what happened & review procedures to protect vulnerable adults. What happens behind closed doors when vulnerable people don't have family or anyone else to watch out for them?

Epilepsy

How brave Min is for telling me her story about developing epilepsy out of the blue -in today's Sunday Mirror Magazine. I worked hard on this to get my facts right as, you may see from my previous blog, my daughter has epilepsy. I learned a lot by speaking to Min. It gave me an insight into how disorientated my daughter must feel after a seizure - she doesn't have the ability to tell me herself.

The autism industry

As a mum desperate to help my severely autistic child, headlines such as - ‘How diet cured my son’s autism,’ always grabbed my attention. I felt sceptical. Either the child had been misdiagnosed & wasn't autistic in the first place - or the parents were fooling themselves.

It's easy to get sucked into the huge autism industry that feeds on families like ours. Understandably, parents want to do whatever they can for their child, but some such claims risk giving parents false hope. I constantly felt guilty that I wasn't doing enough to help my daughter, Chrissy. I wasted lots of time researching treatments including vitamin therapies, speical diets & environmental medicine in the hope that it might help her but, as she has a history of adverse reactions to various mainstream medications, I feared alternative therapies could cause more harm than good.

A third of parents of autistic children have tried unproven 'alternative' treatment in their search for a cure and one in ten has used what medical experts class as a 'potentially harmful approach.'

I eventually tried Chrissy, who's now 27, on the gluten & casein free diet for several months. She became anorexic & it had NO effect on her autistic behaviours.

The truth is, there is currently no 'cure' for autism. My view is that we will eventually identify more chromosome anomalies that pre-dispose people to autism. Four years ago, it emerged that Chrissy’s autism and learning disability was caused by a rare chromosome anomaly. No diet or vitamin regime can treat that. You can adapt the environment & use communication strategies to help someone with autism cope better - but you can only go so far with these approaches. I hope one day someone will come up with more effective drug treatments than the one-size-fits-all anti-psychotic drugs that learning disability psychiatrists prescribe now. Anti-psychotics don't work for everyone & can cause nasty side-effects, such as increased agitation & substantial weight gain. Maybe when we know more about the causes of autism & have better treatments, we parents won't waste so much time trying to 'fix' our children.