Autism Smorgasbord in Manchester and Sheffield

August28

Â Christine Breakey is a master advocate for people on the autism spectrum in the north of England and the host of two of my upcoming lectures in her region this September 2008.Â Here’s our interview

DONNA WILLIAMS
Hi Christine.Â Welcome to the interview.
How did you become involved with the autism world?

CHRISTINE BREAKEY
Hi Donna
This is an interesting question! For a long time, I’ve just thought that it was because this is something that I’m good at, but more recently I’ve realised that it’s because my mother (who’s now 80), probably has Aspergers.

DONNA WILLIAMS
Maybe you became good at it because you had already adapted to having a mother with Aspergers 😉

You are involved in the autism in the north of England, particularly Manchester and Sheffield.
What are the autism services like up there?Â What sort of innovative things have been happening for children and adults in your area?

CHRISTINE BREAKEY
I guess that they’re not really very different to the rest of the UK. Sheffield, is probably very lucky because it has The Autism Centre at Hallam University and it seems to have attracted some very good practitioners, but generally lack of funding means that there is a lack of provision. The innovative schemes seem to be set up outside of mainstraim funding.

DONNA WILLIAMS
What are the most central issues families of people with autism are facing in your region?

CHRISTINE BREAKEY
I think the main issue is still for autistic people to be able to access life opportunities just like anyone else. Things like being able to go to the sort of school that parents want, access to University and employment, are still big areas of concern for families. Parents worry about who will look after their autistic child when they are old, so supported living is still a big concern. Families still face dissaproval from people who don’t have any knowledge of autism, so we’re still trying to educate the general population.

DONNA WILLIAMS
I think for people to access the same life opportunities, one of the things we’ve been doing is asking autism friendly families if they have any casual work for an adult on the spectrum at award wages so the person can begin to get work experience, confidence, a reference, even referral to other autism friendly people who could use their work.Â So it’s also about helping people build portfolios of markettable skills they can use in self employment whilst waiting for work or in case that mainstream job may not happen.

Similarly, we’ve facilitated dinner clubs, activities clubs through http://www.auties.org which is essentially people on the spectrum helping themselves and through that networking they have built skills, made contact, felt part of a community which goes places, does things.Â Autistic adults are also finding out which other autistic adults are in their community so I know some now get together for support or advice or belonging and that’s important because we start to see it’s about more than only funding or care workers.Â It’s also about really connecting people through shared autism friendly activities.

What are the opportunities for adults in your region do you feel adults get largely forgotten?

CHRISTINE BREAKEY
There are some limited opportunities for adults who have Asperger Syndrome. There are 2 supported employment projects in Sheffield and Sheffield Hallam University has good support for adults who are able to go to University. I’m involved in supporting students at Leeds University and students with AS do extremely well there.

Most autistic adults live at home with their parents who are often ‘victims of their own success’. If parents and families are coping, then there doesn’t seem to be much on offer for them, so I suppose that ‘yes’, adults do largely get forgotton. Of couse, there are a large number of adults who possibly have Asperger Syndrome, but because of their age, have not had a diagnosis. Many of these people have come to me in the last couple of years asking for support, either with employment issues or to advocate for them in the courts. There is generally no fundiong for this sort of support, so it’s usually dependent on good will.

DONNA WILLIAMS
One of the wonderful things I recently saw through the social groups here was a bunch of guys on the spectrum who had organised movie nights at one Aspie’s house and started having sleep overs, like their own privately organised cost-free camp.Â It was so cool as before the social groups these guys were all pretty reclusive and socially isolated.Â These kind of social successes start to heal years of alienation from society and scars from years of bullying as their last remembered experiences of being in collective social situations.

Many children who would once have been labeled psychotic, disturbed or retarded are today diagnosed with autism and many who would once have been labeled behaviorally challenged, odd or wierdos are today diagnosed with Asperger’s.Â Do you feel the labels of autism or Asperger’s are adequate to help people understand and advocate for their needs?

CHRISTINE BREAKEY
From my perspective, I do feel that these labels are adequate and I personally don’t favour using the term ‘neuro-diverse’, which is becoming politically popular in the UK. My feeling is that the general public are just beginning to recognise what Autism and Asperger Syndrome mean for individuals and that the lables of Autism and Asperger Syndrome act as pointers to guide people in using suitable approaches. It may be controversial , but my personal feeling is that the term ‘neuro-diverse’ is far too diverse. In an ideal world where every service is person centred, then it could be OK, but in the current climate, I think that the seperate labels are needed to secure appropriate provision.

DONNA WILIAMS
I think the ND idea is also based on the presumption that others are NT, or neuro-typical, which I don’t believe.Â Non-spectrum people are really diverse in their own right and all humans are atypical in some way.Â When I sit with those fixated on so called NT stereotypes, the stereotypes are represented by movie characters and celebrities in gossip magazines but don’t actually hold up in a large percentage of general society.Â Yet is one self isolates on the presumptions of a THEM and US reality, soon enough the stereotypes become unchallenged, presumed realities.Â And built into the term NT is a supremist view that all great advancements in society were only and ever due to those who were Neurodiverse.Â Well Hitler was also pretty atypical, so was Stalin, Pol Pot, Mao.Â It’s a matter of who one chooses as one’s icons.Â And one could be fairly typical yet out of need, accident or default, have a remarkable discovery, invention, innovation which even surprises themselves.Â So I think the political camps are very populist, at times supremist in their stance, and I just don’t do wars.

Do you feel autism is still viewed as a single condition, albeit a spectrum?Â Â How do you feel this feeds into the current divided stances of autism as culture versus requiring cure?

CHRISTINE BREAKEY
I think that opinion is divided on this one. It seems to me that there is a split, with those professionals who have a clinical background seeing autism, Asperger Syndrome, ADHD etc as some sort of fixed entity which can be cured by medication and therapy. These people tend to look to the autistic person to change all of their behaviours in order to fit into mainstream society / culture. Then there are the others, who I consider to be a bit more enlightened. We recognise Autism as being part of the spectrum of ‘normality’ as opposed to ‘abnormality’ and recognise that on that spectrum, there is a whole range of ‘difference’ which is very creative and culturally exciting. Unfortunately though, people tend to like to put things in boxes and I think that this is generally what happens with the Autism Spectrum. Many practitioners then tend to work according to ‘the book’ and if the person doesn’t fit the stereotype, then they get overlooked. Many adults fail to get diagnosed because of this sort of view.

DONNA WILLIAMS
Yes, I see that.Â And I do think that recognition of which AUTISMS are about personality, which are about being mono-tracked, which are about agnosias, aphasias, dyspraxias, which involve significant health or seriously threatening co-morbid disorders, is realistic and humane and should help us distinguish which people feel they need and want no treatment, just understanding and adaptations, and which people feel they need treatment and management tools for some of their autism-associated challenges.Â We need to recognise the DIVERSITY within the Autism Spectrum population.

Awareness has grown of sensory perceptual disorders (agnosias), motor planning disorders (dyspraxia), sensory integration issues (neurological integration issues), co-occurring mood, anxiety and compulsive disorders or gut, immune, metabolic disorders in a PERCENTAGE of people with autism.Â Â Yet any given person with autism may have any combination of these or none of them and merely be an ‘autistic personality’.Â Â Do you feel it is helpful to understand that autism may well be more like a variety of combinations of ‘fruit salads’ rather than seeing ‘autistics’ as one homogenous group?

CHRISTINE BREAKEY
Yes, Yes, Yes. I’ve known many autistic people, especially those who are older and have sought a late diagnosis, to get label after label before someone has actually said ‘Hang on in minute! These are all part of the autism spectrum.’ It would be much more helpful if practitioners, especially those who are involved in diagnosis recognised this and moved away from the fixed model type approach that they seem to have.

DONNA WILLIAMS
Yay!Â I second the motion.

I’m coming to Manchester and Sheffield this September 2008, doing two very different lectures at each venue (Clashing Normalities in Manchester and then Autism spectrum challenges in mainstream environments: strategies for trouble spots in Sheffield).Â Â You’ve experienced my presentations in the past.Â Â How have you found them and what do you feel audiences might get from them?

CHRISTINE BREAKEY
I’ve always found your work inspirational and this applies to your writing as well as to your presentations. For me, the difference to listening to you as opposed to listening to most other autistic speakers is that you don’t only talk about your own experience and perspective. You have a life time’s study of autism during which you’ve acquired vast amounts of knowledge on just about everything that there is to know about autism, whether it is to do with dietary interventions, medication or behaviour management.

Each time I’ve heard you speak there has been something different that I’ve learnt . It’s the amount of knowledge that you have, which isn’t confined to ‘mainstream’;Â and of course, you’re a very talented and entertaining speaker.Â I think also, that the practical advice which you give is invaluable for both parents and professionals. The feed back that I’ve got after your previous presentations has always been that people have been greatly helped and influenced by them.

From my own perspective, reading your book ‘An Inside out Approach’ in about 1997, fundamentally changed the way that I work to being what I now know to be ‘person centred. At the time that I read it, this type of approach was not advocated as behaviour modification seemed to be the only thing on the agenda. I would reccomend anyone who has an autistic child in the family , or who works with autistic people to come to one of your presentations, because they will go away very inspired and with new ideas to put into practice.

DONNA WILLIAMS
I think presentations should be vibrant, engaging, but they should’nt be parades.Â My talks shouldn’t be about ME.Â I can draw on examples from my dance with autism, but I try and draw on examples from a very wide diversity of children and adults right across the spectrum, an ocean of autism spectrum diversity in which I am one person.

I’m big on practicality.Â An autism related presentation ultimately has to be of use because if it is only entertainment you would have better spent your time enjoying a movie. This is why I also try and personalise my talk for people, taking their questions and showing them how what I’m talking about can be put into action in the context of each individual person with autism and particular issues facing each person or family.
How affordable are the lectures for people to attend?

CHRISTINE BREAKEY
I think that all your hosts do their best to make the presentations as affordable as possible. Tickets for people with autism and their families tend to be about Â£5 or Â£10, which is quite reasonable and I’m sure that other hosts, provide some complementary tickets to people and also give discounts for groups, as I do.Â Any profit made from the events that I organise fund unpaid work such as advocacy, for people who fall outside of the net of mainstream provision, so everyone who attends can be sure that it all goes towards services for Autistic people.

DONNA WILLIAMS
I think this is important.

Thanks so much for the interview.Â See you in September!
Warmly,

Donna Williams, Dip Ed, BA Hons
http://www.donnawilliams.net
author, consultant, lecturer.

CHRISTINE BREAKEY
I’m so looking forward to it and hope that it’lll be an opportunity for loads of people to hear you again.

For those interested in these lectures here’s the details: