Also, this stars Henry, the six year-old autistic child mentioned in previous posts.

“I recognise that adults with autism have not been well served by the health and social care system. That is true. I am not going to try to deny that because it is true. The past has not been good enough,”

This admission won’t surprise many parents of children with autism as I have been finding out in recent months. A common theme among parents seems to be the that so little guidance was offered to them and that many social workers best intentions never amounted to any practical results. Here’s an example from an interview with Clare Walker:

“When Henry turned three we first suspected something was wrong.  He was referred to the child development team, and it took a year for that assessment to take place, which is a year I now feel slightly bitter about -  knowing what I now know. It was a year in which literally nothing happened. It was a year in which we worked our way up the waiting list for the multidisciplinary team of ed psychs [educational psychologists], speech and language therapists, consultant paediatricians and so on to spend what was in the end, a day, if that, to conclude what every one knew anyway; that Henry had classic autism. And I feel a bit of an idiot because i had told myself during the course of that year that everything turned on the diagnosis. Once the diagnosis came through this kind of machine would kick into action and everything would be fine. But the diagnosis came and went and apart from a couple of speech therapy sessions that was sort of it really.”

Henry now has a structured developmental program involving a team of ABA therapists. All of which, Clare had arranged herself thanks to a serendipitous meeting with an old colleague at her gym who gave her the details of a child therapist.

“Every normal routine changed. Walking Henry to school; we used to go to this little nursery around the corner and the walk to school became embedded with all sorts of rituals, particularly associated with numbers. There was one door where the number was on the bin rather than on the door and Henry would walk down the garden and turn the bin around. Then we’d go pass some parking spaces marked out on the ground, with numbers again for the different car parking spaces and he’d choose which number he could have a wee on. He’d choose a number six wee or a number two wee.

Ronnie once bumped his head on a sign walking Henry to school and Ronnie used to have to pretend to bump his head on that sign on the way to school every morning. There were days when we both, me and Henry, would just arrive in floods of tears. It was a six or seven minute walk from here. It used to take around 20 minutes, sometimes half an hour. And now, with his therapy Henry is past that, to a huge degree, not entirely, because it’s part of Henry really it’s organic to him. To a degree that back then I would have never have thought possible.”

At the end, Clare is referring to the impact that ABA therapy has had on Henry’s life.

]]> http://healthresponse.wordpress.com/2009/02/18/autism-update/feed/ 0 danielb1234 http://healthresponse.wordpress.com/2009/02/17/the-human-genome/ http://healthresponse.wordpress.com/2009/02/17/the-human-genome/#comments Tue, 17 Feb 2009 23:44:30 +0000 danielb1234 http://healthresponse.wordpress.com/?p=97 ]]> I visited the Wellcome Collection in Euston this week. Among it’s many treasures, is a printed copy of the human genome sequence.

For those who are curious what this actually looks like, here you are:

And, heres what the first book of the first chromosome looks like at a random page:

And finally, here’s how a page from the book reads:

The most notable quality of the exhibition is its variety. Each new display presented something entirely different from within the domain of health and medicine. From glass jars inspired by human organs, to strings of teeth used by chinese dentists to ward off evil spirits, the collection had a lot to offer. So, there’ll be at least a couple more posts about it.

Gone from ‘a lover to a carer’

Image from TimOve Flickr

People  need live in fear of chicken eggs no more! The most covered health story of the week is that eggs are safe once again!

I’ll pretend for a minute that I actually knew the cunning buggers were thought to be dangerous, and join in with the national celebrations by sharing one of my favourite ways of cooking eggs.

Concerned by my own ignorance, I scoured the web to find out what else I could be eating that was harmful to my health.

Unfortunately I don’t have anything ground-breaking to report. Only that if I believed everything I read on the internet, I’d probably have to live on cauliflower. Apparently everything’s is bad for you, which is in no way news.

Among the scarmongering, I did stumble upon this great site full of genuine advice on healthy eating – well worth a visit if you want to work out if you’re diet is actually healthy.

This is part of the Department of Health’s National Dementia Strategy which has been launched to improve upon the department’s poor track record with Alzheimer’s disease.

Just under half of those with Dementia escape diagnosis: there are an estimated 575,000 people living with dementia in England, only 220,000 are registered with the NHS.

One reason for this is that the condition is heavily stigmatised. Even the name Dementia evokes a terrifying, inaccurate picture of the disease. However, it is just that, a disease. And despite treatment being limited, there is support available for the 255,000 people who are never even diagnosed.

For some, like Pratchett in the interview above, these  advances by the NHS will pale in comparison to the glaring fact that none of three Alzheimer’s drugs clinically proven to improve or stabilise the condition have been made available on the NHS.

The reason? Money. Unfortunately the price of the drugs are very high and deemed not worthwhile for the level of improvement they provide.

Hopefully, this strategy will prove worth its cost in the long run.

For some insight into Alzheimer’s and dementia check out BBC Headroom, which is a brilliant service that can help improve awareness of the condition and provide some support for those with it.

Stem Cells

Stem cell therapy is hailed as the panacea of the future and accordingly news stories featuring the latest developments of the treatment are becoming steadily more frequent in the press.

Now that Obama is president, many are expecting huge increases in stem cell funding following a ‘dark age’ under Bush’s religion-centric administration. And the debate concerning the ethical use of embryonic cells has become moot.

Amidst the excitement over a potential new age in medicine, there is one, overlooked problem. A considerable percentage of the world’s population would refuse this treatment.

While widespread application of this treatment is a long way off, it would potentially lead to two very different levels of physical health. Among those who ethically accept the use of stem cell therapy, certain diseases and conditions could be easily curable while many others, who reject this method would still have to undergo traditional, ineffective treatment.

There might also be very little motivation, financially speaking,  for companies to invest in treatments for afflictions that may have been cured by stem cell therapy.

In the end, this huge divide is a very serious consideration for the way in which research moves forward. On the one hand, stem cell research needs to forge ahead, but on the other hand, those who would not accept such a treatment should not be forgotten.

The Machine

With my grandmother out of hospital, they’ve finally set us up with an oxygen converter at home. The idea is that she uses it at night to help her sleep, and then enjoys her day doing as she pleases without it. Great.

Unfortunately, the thing drones away all night long like a light aircraft, complete with occasional sputtering, so, of course, she can’t sleep anymore.

Still, I find it amazing that such a small, household machine can take the air in the room, and extract the pure oxygen from it. And more than that, this machine means that she need never panic again when she feels out of breath.