Aspies For Freedom

A few weeks ago, before I got distracted by my very short-lived media career I emailed Baroness Uddin, a Labour peer who is a trustee of the Autism Speaks UK charity asking why there wasn't any autie on the board or in a leadership position in the charity.

Today, Dame Stephanie Shirley of Autism Speaks UK emailed me.

Dame Stephanie Wrote:

Thank you for this important question addressed to The Baroness Uddin which (after taking legal advice) has been discussed at an early trustee board meeting (Minute No.48 14 April 2005).

The trustee board is regulated by the Charity Commission who advised that a person on the spectrum was not considered to be a "fit person" to undertake trustee responsibilities.

(If you find this harsh, please remember that a lay definition of a "fit person" is someone who, if every other member of the trustee board were run over by the proverbial bus, could ensure the charity's survival).

What the Board agreed was that "it might be more acceptable to have such an individual as an employee, or to advise on specific issues say at the end of a Board meeting. The Board was happy for Dame Stephanie to continue her search for the right person".

I hope the above assures you that we are very keen to involve autistic people in determining the direction of the organisation. People on the spectrum have attended the various briefing meetings, served on the Inaugural Walk Steering Committee, etc.

Sincerely yours

Dame Stephanie Shirley

UK Chair of Trustees

So, she's saying that from before 14th April 2005, she's been searching for the right autistic person to be a trustee but (as there's none on the Board now) she can't have found one.

So if you're a fit and proper person and want to have a say in what Autism Speaks does, especially if you are already a charity trustee can you send a cv to Dame Stephanie at steve@steveshirley.com

On Monday I'll start digging to the Charity Commission because I can't believe they told Autism Speaks that no-one on the spectrum can possibly be a charity trustee.

Good work on this, it needs investigating.

They are clearly bullshitting - The National Autistic Society have an aspie on their board, so an aspie is clearly acceptable to the charities commission.

I'd suggest writing to the commission, complaining about their denial of disabled rights, and quoting that reply.

If the commission do endorse disability discrimination, they can be fined, and their decision can be overturned by a court. If (as appears to be the case) the "charity" is simply making up excuses, their charitable status can be revoked.

Any group claiming to act on behalf of any section of society which refuses to allow the views of members of that section is actually in breach of clear guidelines laid down by government.

Thanks for the pointer Philster, The NAS clearly wants auties to get involved as this quote from their annual report shows.

Quote:

Also, an increasing number of members are individuals with autism, and the trustees welcome this trend. Stratagems are in hand to develop the expertise and confidence of members who have autism so that they might contribute successfully to the work of the Society at all levels. There are currently three Councillors (one of whom is also a trustee) who have a formal diagnosis of autism, but there is a wide range of other ways in which suitable individuals with autism might contribute to the future work and success of the charity.

It's great evidence that Autism Speaks UK are not interested in what we say.

Would they not consider someone like Temple Gradin (sp?) fit to be a board trustee?  I find it disturbing.  I know that autism is a spectrum and (please do not be offended) a high percentage are not likely to have mastered all the skills expected of a trustee, BUT that does not mean NONE have.

Despite being mostly NT, I vote with you guys on this.  More than just as counselors or employees, these organizations need someone on the BOARD who has the condition.  The board chooses the direction and goals of the organization.  Not much more that you would care so much about - I've served on boards, it's 99% about fundraising - but they do set the key direction and goals.

Maybe it's more about where you put the cart and where you put the horse.  Say, "reserve a place for an autistic on the board" and a negative answer is likely.  Find someone autistic who has the skills and wants to be on the board ... how could they say no?  I'm totally with the person above who suggested finding a candidate to present.

An update - this afternoon I heard back from the UK Charity Commission:

Quote:

Dear Andy,
I cannot shed any further light on any discussions between the Commission and Autism Speaks but the Commission's position on this issue is that there is no general rule of law which prevents a person with learning disabilities from being a charity trustee. In order to be a trustee an individual needs to have the capacity and comprehension to understand and fulfil their duties and responsibilities.
The Commission welcomes user involvement both as trustees and in other capacities such as being members of an advisory group as a way of helping a charity achieve its aims more effectively.
I hope that this clarifies our position.
Kind regards
Rob Hewitt
Charity Commission Direct Team

DM Andy

Amy

Philster

DM Andy

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DM Andy