Wednesday, 31 May 2017

Bizarre Research to 'Cure' Autism

Here we go again.  Another bit of autism research emerges.  This one, into a drug called Suramin.

Suramin is a drug that's been around a while.  Amongst its possible side effects, arthritis, nerve damage, loss of vision, vomiting, hepatitis, bleeding, collapse, jaundice and anorexia.

A research team had the idea that it might be a suitable drug for autistic children.  They gave a dose of it to five young boys (average age about 8).  Yes, five.

They then asked the parents to report whether the boys were better behaved or spoke more, after having it...and they applied an ADOS autism test to the children more than once.  Plus some medical tests.  The ADOS test is not meant to show repeat measurement changes.  That's not what it is for.  The parents reckoned their child's behaviour had improved.   Well, it wore off after a while, and the researchers noted some side effects also.  The young people were not asked whether it improved their lives, as far as I can tell.  They were irrelevant, other than as 'lab animals', it seems.

The researcher put up a media article, saying autism rates were increasing.  They're not - we're just better at diagnosis.  The researcher also claimed that autistic people are a chronic disease.  We're not a chronic disease, we are a different brain design, which comes with a range of positives as well as challenges in today's busy, noisy world.   In the article, the researcher also said that they were keen to produce a treatment that only targeted the alleged problem behaviours (like communicating differently from parental expectations), whilst leaving 'special abilities' intact.   But, curiously, their study did not test for this preservation of 'special ability', at all. 

So, they gave a potentially dangerous drug to five young boys.  And measured success as being a change to non-autistic communication and movement.  

Am I missing something here?
We know that autism is a neurodiversity.  We communicate and move differently because that is how we are.  It is not a fault.  It is a difference.  
We know that most autistic people are not male.
We know that autism is not rising in numbers.  Diagnosis is improving.
We know that parents sometimes want to see improvement when there really is none.
We know that most autistic young people eventually do speak, and eventually do learn new skills that they were lacking at the start, just like everyone else. But sometimes on a different time trajectory.
We have no idea what the long term effects are of giving this drug to those young boys.
We have no data at all on the effects on females, or older autistic people.

Meantime, a lot of parents fed the idea that we are a 'chronic disease' will be trying to find a dodgy doc who will give their child a dose or two of this stuff.  Well, they will, won't they.

Not impressed.  Dear researchers, please try to get a grip on what autism is, and isn't, before trialling a potentially dangerous medication on children.

Thank you.

[The picture at the top showed a shocked older woman.  It's not a picture of me.  But it is a picture of how shocked I was].

Saturday, 27 May 2017

Faith and Retreat

Magdala Encounter Chapel

I give thanks for the kindness of Bishop John in allowing me to join his retreat to the Holy Lands in May.

As an autistic Christian, long travel is daunting.  But ...encountering the very stones on which Jesus walked?  Touching the smooth, cool surfaces.  Encountering the fragrant beauty of the flowers and herbs that surrounded him in the landscape.  Bathing in the light of dawn, as the sunlight touches the hills, the lake...It makes it worth every moment of anxiety, and every long hour of careful planning and preparation.

I went with a question.  And with a heart filled with worry.

In the Encounter Chapel, in the Magdala area, I found what I needed.  In quiet prayer during the service.  In being able to say what hurts in my life.  In daring to reach, in prayer, for the 'hem of Jesus's garment', hoping for healing.  I mean this figuratively, not literally.  But, the beautiful painting in that chapel was breathtaking.  It meant so much to me, as a marginalised woman in today's society.  It shows the hand of a woman, reaching out to touch the hem of Jesus's clothes, unseen by him.  She hoped for healing.  Just by even that tiny, tiny action.  Such was her faith.  Healing, physical, and spiritual, after a lifetime of being excluded from society because of a situation not of her making.  She was healed.  He put her back into society, through her faith, through his power.

I came out at peace.

Truly blessed with the wonderful people who shared that retreat.  With all of the lovely people of all cultures, faiths and backgrounds that we met as we visited the Holy sites.  With the kindness of the airport and airline staff who helped me get there and back safely and without added anxiety.  Thanks to lovely family who knew how important this was to me, and who sent me with their own blessing. Coping without me is not a small thing, for them.

Mostly, huge thanks to the wise leaders of our Retreat.   They allowed me to travel in a group of people of amazing minds and superb verbal ability. People of great knowledge of faith and huge public authority.  It was such an honour to be a small part of their journey.

It meant so much.

After the recent journey with cancer, and its aftermath, each day is a gift I may never be given again.  I may live a full life, thanks to the team. But one never knows, after cancer. I may never be able to return.  So, I keep each precious moment in my heart.

Wednesday, 10 May 2017

Autism and Violent Crime: Autistic people more peaceful than others on average.

Are autistic people more violent, on average?  The results are in, as they often say on the TV. 

15% less likely to be violently criminal than other people. (That's what a rate of 0.85 means).

The exception was when autistic people also had ADHD or a conduct disorder.  

So, it seems autistic people are, on average, more peaceful than other people.  15% more peaceful. This adds to the data we already have on autistic people being generally more moral, more honest, more diligent.  Generally more able to detect the first signs of danger in the environment, thanks to different hearing and vision. 

Tell me again how removing us from the gene pool will help everyone?   

Glad of the marvellous peace-campaigning autistic friends and colleagues.  Glad of the many patient loving autistic parents and carers.  Glad of the wise and noble autistic friends aplenty who share my life.  We are generally a force for peace, for progress, for social responsibility.  Yes, exceptions will apply.  The exceptions are very visible, and it's easy to think they are 'autism'.  But, there are exceptions for all kinds of people.  Short people, tall people, people with size 7 feet, people living in towns beginning with the letter P. Saying violence is part of autism is simply incorrect.  Violence isn't part of the diagnostic criteria.  I wonder how many autistic people have had to live a terrible life, because we've had autism and conduct disorder mixed up, for example?  Do we need better training for diagnostic teams, so they can 'unpick' autism from other things, and assign behaviours to the correct thing?

Dear media, please get a grip on what is autism, and what is a combination of things, or something quite different.  Autistic people are already hugely more likely to be victims of crime, victims of fraud, assault, rape, bullying, ostracism.  Autistic people are already likely to die some 16 years earlier than others.

This mostly peaceful and gentle population deserves better.