Wednesday, 14 December 2011

Winter 2011

With so much bleak financial and global news at the moment Resources for Autism appears to be bucking the trend in gloom and doom. Currently we are awash with words like ‘expansion’ and ‘extension’ and ‘increase in delivery’ and I am delighted that is the case. It is estimated that 1% of the entire population are on the Autistic Spectrum. That is a lot of people needing appropriate support and care. As an organisation we are committed to improving the quality of life for both our users and their families and it is only by providing high quality, local and accessible practical services that we can do so.

We have an astute group of Trustees who ensure that we do not over-reach ourselves despite increasing demand and their rule is that if we do not have the funding to run something for at least a year then it cannot start. That sometimes makes it hard to begin something new and innovative as services need to exist to prove they are effective. It is in those circumstances that we need imaginative funders who are prepared to take a risk and the Cinven Company Trust has done just that with our new Autism to Autism project. For two years they are going to be funding a new project that will support adults with a diagnosis of Autism or Aspergers Syndrome to help others on the spectrum as volunteers. I believe this project will do much more than it says on the tin. Giving adults with autism the opportunity to work, albeit voluntarily, in an environment that is relatively safe but that is part of the wider community, is the first step for many into the world of paid work. Some of our adults will always need support but this may be just having someone to check in with each week to gain reassurance or to intervene on their behalf if things are going awry but before they turn into a disaster. For many just gaining confidence and learning the rules that govern survival in a work environment will be enough and this project will give those skills. Cinven have taken a risk supporting us and we are going to make the very best use of their generosity to prove that adults with autism have a great deal to offer their community given the chance. One of our current volunteers who gives invaluable help to us three days a week says of her experience ‘‘All my life I have been on the outside looking in. Now I am content looking out and that would not of been possible without the kindness and understanding I have received from everyone at Resources for Autism’ She has a diagnosis of autism and has had really awful experiences of trying to work and hopefully her time with us is giving her the confidence to try again when she identify a suitable paid vacancy with an employer who is willing to make the very few adjustments necessary to make her comfortable in a work setting.

Another huge positive is the appointment of our new West Midlands Manager. Laky Sahota is a very experienced voluntary sector manager who is joining us to help develop our services in the West Midlands. He has many years experience in play and youth work settings including a long stint at managerial level with Play England. He has already brought energy and charm to our team and I have no doubt that his skills will see our services in the West Midlands continue to develop and thrive.

I am never complacent and I am aware that we have been extraordinarily lucky in weathering the external storms so far but I remain very positive about our future and there are three main reasons for my optimism.

  • · I have a wonderful staff team who are well trained, well supported and full of compassion.
  • · We provide services that people want and value and that meet our users needs.
  • · We have your support!

I am always pleased to hear from you and if you do want to get in touch just email me at

I hope the New Year brings you peace, happiness and good health.


Monday, 31 October 2011

Autumn 2011

I am writing this on Halloween, traditionally the day that we are meant to experience all kinds of horrible things. Sadly for many of our families horrible things happen all too often. This half term we only provided one half term holiday scheme and many parents have been deeply disappointed that there has not been more. Some report absolutely no alternative for their children during the week and have had to miss work to spend a frustrating and isolating week at home with no activities their child was welcome to attend. It is hugely sad that organisations such as ours have to chose between providing services or between a little for the many or more for the few, but with limited income that is what we are faced with.

Halloween is also traditionally a time of taking stock. It is when people looked at what they had achieved over the bounteous spring and summer and how it would last them over the hard winter to come. Resources for Autism has been extremely lucky (or extremely well managed!) and have been successful at winning tenders for services, achieving positive results from carefully crafted lottery bids and generous grants from many Trusts and Foundations. However, we have to manage these with care and ensure that our funding lasts not just the winter but for the foreseeable future while we continue to try to find new and inspirational sources of money to enable us to provide the services our users want and deserve.

Amongst those services, we have just started an exciting women only adult group in partnership with Community Focus. Girls and women with autism often find themselves in groups dominated by boys and men as diagnosis is around 75% male. For some having contact with other girls and women can be reassuring and helpful and the group is creating a great deal of interest. Also new is our Autism to Autism volunteering project which is about to get off the ground. We have a number of volunteers who themselves have a diagnosis of autism or aspergers and who want to help others. They are excellent volunteers but often need just a little extra support and this project aims to ensure that support is available and that we can grow this project to attract more people with autism who would like to contribute to the world around them but are denied the possibility due to their difficulties.

Our West Midlands service is about to grow too and the summer seeds have been sown for this with a Reaching Communities grant from the Big Lottery and a new manger for the region about to be appointed. Resources for Autism has very few managers. Our aim is to spend every penny we get on front line services but those services do need someone to keep the wheels oiled and as it is now clear we are set to stay in the West Midlands and hopefully continue to grow what we do this seems a sensible move which will hopefully be cost effective in the long run.

So this Halloween finds me looking back over a successful summer and cautiously optimistic for the winter ahead. I don't feel too scared of the demons and devils out there but I am aware that wearing garlic round my neck and feeling hopeful is not enough and we must continue the hard work needed to offer the very best services we can for as many as we can while we look ahead for an even more fruitful spring and summer next year.

As always I welcome your comments and am always delighted to hear from anyone regarding what we do and how we do it.

Very best wishes

Tuesday, 21 June 2011

Summer is approaching and with it the worry for many families about what will happen when schools and colleges close or when regular carers go on holiday leaving those with autism feeling uncertain and often lonely.

Whilst RfA holiday schemes will be supporting hundreds of children in Birmingham and London with a week of specialist holiday play, most families want more and many adults find themselves with nothing at all to do over the summer weeks.

Going away on holiday can be extremely tricky when a family member hates change. RfA can and does help with practical strategies to make travel a little more bearable. Just remembering to say that not only will you be coming home again but that everything will still be there and the same on your return can be very reassuring as can photos of exactly where you are going and not saying just that you are going to the airport to get a plane but that you are going to the airport to wait and then you will catch a plane, a very different scenario and helpful in keeping stress levels under control!

It is these seemingly little things, one week of appropriate holiday play; strategies to make travel less of a nightmare; a couple of hours a week where a teenager can be themselves with friends who understand them; volunteers willing to support a child to the park for an hour or two giving them a bit of fun and the family a break; caring and expert answers to difficult questions; someone to talk to when you need them; all of these little things go some way to making the lives of those affected by autism and those who love them, a bit easier.

Although I would love us to do more of the 'big' things such as providing really excellent carers every day round the clock for those who need it or running schools that really cater for the needs of children with autism or supporting isolated adults whose behaviour is so challenging that they are excluded from most areas of life to live in housing that is designed to suit their needs; the reality is that, for now, I have to be happy that we do those 'little' things incredibly reliably and incredibly well.

It will never be enough for me or for our users but when a teenager is able to say of one of our Birmingham Youth Clubs:

'Like here nobodies laughing at people about who they are.'

It speaks volumes of his previous experiences and of how we manage for a little time in his week to get it right.

I know that those children and young people lucky enough to have managed to get a place on our schemes and those adults who will continue to attend sports groups, arts groups and social groups run by my amazing team will have fun over the summer and I hope that those who have not been quite so lucky this time will see us more able to provide for them in the future.

This time of year always makes me feel hopeful and despite all the doom and gloom around I do hope we will be able to grow our services and respond to all the need out there. If we can help you with either the little or the big things then do get in touch and in the meantime I wish you a happy, warm, safe and relaxing summer.

Wednesday, 1 June 2011

I am writing this having just watched the dreadful Panorama documentary ‘The Abuse Exposed’. For those who did not see it this was a documentary on sustained abuse in a private hospital for those with learning difficulties and/or autism.

The abuse was terrifying and terrible. That any human being, let alone those employed as carers, can treat other humans in the way that we saw on the programme is almost impossible to believe but there were other things that were shocking in the programme. The response from the CEO of the company who managed the hospital was paltry to say the least. He was sorry, he did not know, it won’t happen again. None of that is good enough. As the senior manager for Resources I know the buck stops with me. If there is anything in any of our services that is not good enough, then I am responsible. I have to make it my business to know. If there is any doubt at all I would always err on the side of action. So long as we claim to care we have to make sure that we care to the highest standards all the time. There is no mid way.

The programme made me even more determined to continue to develop our adult services to ensure that those who wish to and who are able to remain in the community are helped to do so. It is essential that there is support available in community organisations for both individuals and for their families. This serves several purposes. Adults with autism need somewhere they can be accepted, have fun, have expanded opportunities, be listened to and be heard. It is great if we can also help extend social and practical skills but that is a bonus. It is vital that there are community organisations which are just there for their users, not necessarily tied to achievement but just a place that is safe to be and where everyone can be themselves. The community should also be a place of vigilance for those who are vulnerable. We are responsible for each other and we must speak out if we think that anyone is being hurt or treated with a lack of care and respect. The minute someone is in a locked institution the opportunities for hidden abuse increase. That is not to say most hospitals and residential institutions are not good and caring places but where there is no one seeing in every day and at any time then the opportunity for the kind of torture exposed in the Panorama programme increases.

Parents and carers need the chance to voice their concerns about aging and what will happen to those they love when they die. The Panorama programme will only add to the anxiety that most parents have as to who will end up looking after their adult children. As parents we all believe no one can love our children as much as we do but we must have faith that professional carers will, at the very least, be kind, well trained and want to do the best for those they look after.

At Resources we are committed to extend the number of individual carers who can offer care on a day to day basis but that will always be linked to groups so that those carers have support, supervision, can see best practice from others and continue to learn. We must offer training and respect to our carers so that they know their work as valued and valuable and in that they in turn give respect to the adults they support.

None of this is rocket science but it does take commitment and money. Good care does not come cheap, however money does not guarantee good care either. The hospital provision featured in the programme was not cheap, lack of money is not the only cause of poor services. Commitment from the top to high quality services and caring staff is the most important thing and at Resources for Autism that commitment is absolute from both myself and our trustees.