Autism

Autism

November 12, 2005

in Autism

I am fortunate to have been born into an era where the dominant caricature of autistic people is switching from drooling, non-communicative eternal children to slightly psychopathic geniuses who can’t stop talking every second they aren’t reprogramming things. As stereotypes go, it’s certainly improving. But they are stereotypes, nonetheless.

Autism, at its very basic, is about thinking differently. It’s not about being observant, it’s about observing different things. It’s not about studying subjects that your teachers tell you will get you good grades to go to college, it’s about finding a subject so fascinating you just can’t help but spend hours learning facts about it that fully deepen your appreciation of this amazing, intriguing thing that you want to show everyone.

Being autistic is a very powerful experience. I wouldn’t change it for the world. It means that what I focus on in life is different from non-autistic people. I *like* paperwork. I like sorting things. I like solving problems, both mine and other people’s. I don’t enjoy sitting around. I don’t like mindlessly obeying rules that have no purpose.

None of that make me sound like a vegetable. The reason autism is disabling is not because all autistic people are inherently incapable of functioning, it’s because we do things differently, and many people can’t tolerate that. So the autistic child who won’t sit at their desk quietly reading because the teacher has a headache is considered a problem. The autistic co-worker who won’t go for a drink with you is considered weird. The autistic partner who insists on having separate bedrooms is considered cold and stand offish. None of those actions are in themselves strange other than they are deemed so by people who can’t tolerate not being “normal”.

And *that* is the problem. Not being autistic. In societies where people just do their own thing and accept other people doing so, autism is not disabling, odd, or even noticeable. Autistic people are disproportionately present in niche subcultures where it’s ok to not worry about fitting in.

This isn’t to say that being autistic comes with challenges. Autistic people blurt out things they shouldn’t. They can struggle to hold more than one train of thought at the same time. They can obsessively eat the same food, play the same games, or sponsor the same projects over and over again until everyone around them is sick of it. But everything I just listed as the downside of autism can be a plus. You aren’t afraid of saying things that need to be said. You can’t be distracted from your work. Relentless practice makes you very, very good at what you do, whether that’s piano or first aid.

Being autistic in this society is hard – being autistic generally is awesome. I don’t believe that autistic people should be given special treatment. I think that all people should be forgiven when they mess up, that all children should be loved and appreciated for what they are rather than squashed into boxes.

Until that day comes, autistic people are going to stand out. I think that every autistic person has to wrestle with how to deal with that reality. What I am seeking to do here, then, is to produce resources which can explain autism to people who don’t realise they have it, to help autistic adults access support, and make everyone else realise that being autistic doesn’t make you Rainman, it doesn’t mean you’re mentally retarded, and it doesn’t necessarily mean you’re weird. It means you’re different, and that is absolutely fine.

Resources:

* The Reality of an Autistic Person – an indepth article I wrote for a friend to explain what it is like to live with autism.
* Autism Provision by NHS Primary Care Trust – A list of FOI requests made to every Primary Care Trust in the country regarding services for autistic people.
* Autism Quiz – coming soon!

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See also Autism Provision by NHS Primary Care Trust 2012.

 

Dear Ms. McCulloch

Freedom of Information Enquiry

 

Thank you for your recent enquiry under the Freedom of Information Act. Please find your response detailed below.

 

Requesters Question and Trust Response:

 

 

 

1.    How many adults you have with a diagnosis of autistic spectrum disorder (any, although if there are separate statistics for Asperger’s, HFA, LFA, they would be appreciated) in your area;

We do not currently hold a register for this information but the Health Needs Assessments for 2011 indicating the following:-

 

2011 Health Needs Assessment Autism Aspergers Syndrome High Function Autism Total
Central Bedfordshire 2552 918 893 4363
Bedford Borough 1607 578 562 2747

 

2.    How many children;

 

NHS Bedfordshire does not have a record of numbers of children with ASD

 

Diagnosis is usually led by Paediatricians as part of a multi disciplinary assessment, working from the Child Development Centre in Kempston and the Edwin Lobo centre in Luton. Children’s Mental health services will lead on diagnosis where there is co morbidity with a mental health problem.

 

Services that work with children with ASD include. Occupational Therapy, Speech and Language Team, Paediatrics, Health Visitors, Special School Nurses, CAMHS, CAMHS Learning disability team.

 

For this information please redirect your enquiry to foi@sept.nhs.uk

 

 

3.    What diagnostic services are available to a) adults and b) children;

 

Adults diagnostic is commissioned through a contract with South London & Waudsley, for Adults with a learning disability diagnosis is provided by South Essex Partnership Trust. We are currently negotiating for a local assessment and diagnosis service to be in place in Bedfordshire.

 

4.    What agencies or teams you have that work with autistic people, provide support/services, strategise, etc.

 

Autism Bedfordshire – 1:1 support and a range of courses

SEPT – provide intensive support team for people with Mental Health or behaviour which Challenge.  Each local authority in Bedfordshire has a joint strategy with health and there are 4 fulfilling lives partnership which take place each year to review progress against the strategy and their implementation plan.  There is a group of commissioners across each local authority and health body which are responsible for delivering the recommendation within the strategy.

 

The contact for NHS Bedfordshire for the Fulfilling Life Strategy is Michelle Bradley – michelle.bradley@bedfordshire.nhs.uk

 

5.    An email address/website for each of these agencies or teams where possible.

 

Mike Osborne – mike.osborne@autismbeds.org

SEPT –  Terri.dorman@sept.nhs.uk

 

6.    What the typical process should be for an adult in your area first asking their GP for an assessment for autistic spectrum disorder to receiving a diagnosis/support.

 

GP make a referral to the Secondary Mental Health Provider or contact Christine Garrett’s team – Christine.garrett@bedfordshire.nhs.uk – Individual funding who will authorise the request and GP can then liaise with SLAM.

 

 

If you disagree with our decision or are otherwise dissatisfied with how we have dealt with your request in the first instance you may approach our Board Secretary in writing:

 

Jo Grizzell

Head of Governance and Risk

NHS Bedfordshire and Luton

 

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NHS Sheffield FOI Request Regarding Autism Provision 2012

January 13, 2013

See also Autism Provision by NHS Primary Care Trust 2012.   Dear Sarah McCulloch,   Freedom of Information Request                         Reference:  FOI-186-12   I am writing to confirm that we have now completed the search for the information you requested.  Please find below your request and our response to your submitted enquiry:   Your request: 1.       How […]

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NHS Bassetlaw FOI Request Regarding Autism Provision 2012

January 13, 2013

See also Autism Provision by NHS Primary Care Trust 2012. Dear Sarah   FOI_12_225   Thank you for your recent request for information.  Please see our responses highlighted below:   1. How many adults you have with a diagnosis of autistic spectrum disorder (any, although if there are separate statistics for Asperger’s, HFA, LFA, they would […]

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NHS Wiltshire FOI Request Regarding Autism Provision 2012

January 13, 2013

See also Autism Provision by NHS Primary Care Trust 2012. Dear Ms McCulloch In regards to your FOI dated 9 October. Please find below the response from Wiltshire PCT highlighted in Blue. Yours sincerely, Lisa Lisa O’Donnell ———- Hi there,   I’ve been given this email for Freedom of Information for your PCT. Please could I […]

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NHS Bury FOI Request Regarding Autism Provision 2012

October 9, 2012

See also Autism Provision by NHS Primary Care Trust 2012. Dear Ms McCulloch Further to your request for information under the Freedom of Information Act, I have pleasure in providing the following information in relation to NHS Bury (Bury PCT). 1.   1. How many adults you have with a diagnosis of autistic spectrum disorder (any, although if […]

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NHS Rotherham FOI Request Regarding Autism Provision 2012

August 16, 2012

See also Autism Provision by NHS Primary Care Trust 2012. [I did not edit this response. This mess was sent to me as is, though not written by the person who sent it to me.]   Hi there,   I’ve been given this email for Freedom of Information for your PCT. Please could I get an […]

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NHS Barnesley FOI Request Regarding Autism Provision 2012

August 16, 2012

See also Autism Provision by NHS Primary Care Trust 2012. [I have not edited this email, this mess is literally what they sent me]   Dear  McCulloch   In response to your request for information I have received the following details:-   1. How many adults you have with a diagnosis of autistic spectrum disorder (any, although […]

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NHS Kirklees FOI Request Regarding Autism Provision 2012

August 16, 2012

See also Autism Provision by NHS Primary Care Trust 2012.   Dear Ms McCulloch Freedom of Information Act 2000  I am writing in respect of your recent enquiry for information held by the PCT under the provisions of the Freedom of Information Act 2000. You asked for information relating to Autistic Spectrum Disorder In response to your […]

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NHS Nottingham City FOI Request Regarding Autism Provision 2012

August 16, 2012

See also Autism Provision by NHS Primary Care Trust 2012. FREEDOM OF INFORMATION ACT 2000 – INFORMATION REQUEST (444/12)   Your request for information under the Freedom of Information Act 2000 has now been considered and I can confirm that NHS Nottingham City does hold some of the information you have requested.   1.            How many […]

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NHS Northamptonshire FOI Request Regarding Autism Provision 2012

August 16, 2012

See also Autism Provision by NHS Primary Care Trust 2012. Dear Sarah, Please find below the additional response covering NHS Northants. Please accept my apologies for the delay. 1. How many adults you have with a diagnosis of autistic spectrum disorder (any, although if there are separate statistics for Asperger’s, HFA, LFA, they would be appreciated) […]

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