Thursday, 27 November 2008

Mobile phone filming

C just loves to watch peoples feet as they pass by - he can get very excited much to the shock/horror and amusement of those passing. Their jaws drop to the floor, some stand rooted to the spot as they try and understand what they are seeing. Some trip as they aren’t looking where they are going. And of course you get a range of comments made.
To be fair many people do not even notice him and some are very friendly and come over for a chat.
C does this everywhere we go. He has a favourite spot in our local shopping centre near the base of an escalator, there is also a cafe where my friend and I catch up over a latte keeping our eyes peeled for any potential trouble, whilst C is in his sensory heaven.

The security guards know us well (as we have been doing this for about 10 years now) and keep an eye on C as in the past there have been the odd incident of small gangs of kids surrounding C. I have become hardened to the comments and the stares but its teenagers filming C on their mobiles that I cannot ignore. And this seems to be happening more often. C seems totally oblivious to it all!But as C is so happy watching feet - he’s not in anyone’s way and keeps himself to him self I am not going to stop him doing this. So what can I do? Any ideas?
My friend and I have found if we pretend to film the filmers they soon stop. Last week I actually took a photo of 2 lads thinking I will put it on my blog. But of course that would make me as bad as them - so I haven’t.

I did email my local police to ask if it was illegal to take photos of someone without their consent. And apparently its not!!

"It is not illegal to film or take photos of anyone although if the group of youths are the same group who continue to film your son this could potentially be harassment which is an offence."

So does this mean different youths taking films is not harassment??! I decided to write to a few other organisations to see if anyone could offer advice. And thought I would share the responses, they weren't very helpful but some of the links may be useful to others who are being harassed.

Mencap said
Thank you for your email. Unfortunately we are not in a position to advise on this situation, however there are a few organisations I would suggest you approach. You could try the Citizens Advice Bureau. You might also find it useful to approach Chilndet, who provide information on Internet safety, or Respond, who offer counselling and advice/support on abuse for people with a learning disability.

I emailed Respond but they haven’t responded!

The NAS suggested i contact Community Legal Advice.

I emailed The Office for disability issues;
For guidance on your son's rights under the Disability Discrimination Act (DDA) you may wish to contact the Equality and Human Rights Commission (EHRC). The commission is an independent organisation which provides advice and information to disabled people and the general public, amongst others, on a range of subjects, including on disabled people's rights under the DDA. website at
The DDA prohibits discrimination in the context of employment, education and transport, and the provision of goods, facilities and services.
The DDA says that harassment occurs where, for a reason which relates to a person’s disability, another person engages in unwanted conduct which has the purpose or effect of violating the disabled person’s dignity, or creating an intimidating, hostile, degrading or humiliating environment for him. A new provision, explicitly outlawing harassment for a reason related to a person’s disability, was introduced in 2004. It does not, however, cover hate crime, general harassment in public places, or specific types of abuse.
However, other legislation may be relevant. The Protection from Harassment Act 1997 provides some protection against harassment and the Criminal Justice Act 2003 places a statutory duty on sentencers to increase sentences for offences aggravated by hostility towards the victim because of his or her disability.
You may also wish to have a look at the Crown Prosecution Service's policy statement on disability hate crime:
You may also wish to note for example (pg. 46) that the Department for Children, Schools and Families has convened a taskforce on "cyberbullying". See also the proposals concerning removing inappropriate content from such sites as YouTube (pps. 32-37).
Yours sincerely,

I emailed the Equality and Human Rights Commission - they just suggested I contact a solicitor.
My Case manager has also flagged C up to the Police Vulnerable Adults Unit, so they are aware of C and what is happening.

There are various Autism awareness alert/information cards that I could hand out but I was thinking of designing my own - what would you write on it?
Since writing this

Saturday, 15 November 2008


I was very pleased to hear that the plight of fruit and veg who were discriminated against because they did not comply will soon be over. Maybe there is hope for the rest of us!

Earlier this week I attended the Carers UK summit which was very interesting. There were lively debates and voting on many topics. Phil Hope MP, Minister for Carers gave a great speech. Because he has some first hand experience of caring he knows many of our issues. He is very new in his job so hopefully very enthusiastic. He urged us all to email our MP’s so to keep our views on the political agenda. Carers UK do some excellent campaigning and influence many policy makers. And is free to join.

There was a wall where we could put up our thoughts.

Whilst in London I also took the opportunity to visit Stephen Wiltshire’s gallery. I’ve seen his pictures on TV and on his website, but it was great to see his drawings in person. He is very talented. I treated myself to 3 of his prints (well post cards as couldn’t afford the originals!) Stephen also sent me this photo to my on my Faces of Autism blog which you may have seen.

So a great day in London, but I did miss not having C with me on the packed commuter trains as people give us a wide birth!

Other news:
Id also like to mention my dear friend DJ Kirkby (who I had the great pleasure of meeting a few weeks ago). DJ was diagnosed Asperger earlier this year (by the same person who diagnosed C!) and has written a book which comes on sale soon - so a great idea for a Christmas present! Tickets are on sale for what sounds like an exciting book launch. I am hoping to travel down with the beautiful Halo - your welcome to join us!

And Kev at LeftbrainRightBrain has launched a new website called Autism Myths - its worth checking out.

Wednesday, 5 November 2008


Thinking over C’s life I have been most stressed when C is in pain either through self injury or when he has been ill and it has been difficult to diagnose as he wont let anyone near him, so sometimes the illness gets left untreated for long periods because of his self injury. And then when diagnosed it is difficult to get medication down him! It can be a vicious circle.

We all feel and show pain differently. We all tolerate different amounts of pain. Some of us even like inflicting pain on ourselves.
People look at C and assume because of his head banging he must have a high pain threshold. But when he is in pain he head bangs more. Others see it as this is just what C does. Not that he is trying to tell us something.

So I was very interested to read this summary of a local project that has recently been done.
The project involved talking to people with learning disabilities, residential and day service staff and carers.
The project found that;
14% of day staff,
33% of residential staff
and 66% of family carers
think that people with learning disabilities have a higher pain threshold than people with out learning disabilities.

There is no evidence that people with learning disabilities have a higher pain threshold than other people.

86% of day service staff said that they had taken medication for pain within the last 3 months. Only 4% of people with learning disabilities had been offered medication in the same period of time
79% of residential staff that they had taken medication for pain within the last 3 months.
Only 39% of people with learning disabilities had been offered medication in the same period of time.
We all need to know that;
People with learning disabilities feel pain as badly as other people. People should not have to be in pain.
People with a learning disability may not say they are in pain, but their behaviour might change. (doesn't every ones?!) We need to find out if people with a learning disability are in pain before saying they have "challenging behaviour".
Staff and carers can use
pain picture cards with people. However for some like C who is unable to use picture cards so pain signals and treatment should be identified in the person’s Health action plan.
Staff need training in pain recognition and management. Health screening needs to improve.
In July this year there was an
Independent inquiry into access to healthcare for people with learning disabilities. The inquiry was ordered in response to Mencap's ‘Death by indifference' report, which told the stories of six people with a learning disability who we believe died unnecessarily while in NHS care.

Did you know GPs are getting £100 bonuses for carrying out health checks on people with learning disabilities. Shouldn't they be doing this anyway?!

So in light of National stress awareness day, Ive had my say - now over to you - so what makes you stressed?