ALAG Conference 2019

Overcoming Barriers: Neurodiversity in Autism

On Thursday 17 October 2019 ALAG held its first conference to celebrate its fifth year as an independent charity. The conference was entitled ‘Overcoming Barriers: Neurodiversity in Autism’ and held at the Indian YMCA near Warren Street in central London. Over 70 people attended and the event was extremely well received.

The goal of the conference was to improve delegates’ understanding of what it feels like to be autistic, how autistic people may present, some issues that may arise in their lives and how to move towards successfully overcoming them. To this end, ALAG brought together as speakers both autistic people and professionals working in clinical or research settings to share their insights on different facets of the condition and life with it.

During the programme, we also had a contribution by a mother and uncle of an autistic teenager, who spoke movingly about their care and support for their young person.

The morning started with a very informative talk on autism and gender identity by Ruth Millman, in which she shed light on transgender identities and how it can feel to identify as trans in all its different forms, including non-binary identities. The topic is important because autistic people are much more likely than neurotypical people to be transgender or to not identify with the gender roles commonly assigned to the sexes by society.

Ruth also gave thought to the difficulty of being doubly marginalised in society: once by virtue of being autistic and once by being transgender. Where can the person feel they fit? In autistic groups trans people are still the minority and not always accepted, while in trans circles, most people are NT and don’t understand about the specific challenged autistic people face. Ruth is planning to set up a trans group for autistic people in the new year in West Hampstead.

The next presentation looked at autism and mental health. Based on lived experience, it focused on ways people, including mental health services, can make mental health support more accessible to an autistic person so that they will actually be able to benefit from support offered rather than being failed and then considered treatment resistant.

After a short break for refreshments, Dr Jason Crabtree spoke on autism and ageing. Based on his recent research, he explained that autistic people do not have a greater incidence of Alzheimer Disease and their cognitive function does not decline more than that of their neurotypical peers.

Also, cognitive profiles seem to remain stable over time. This means that what an autistic person was good and slow at cognitively when younger remains relatively stable over time so that cognitive differences between autistic and neurotypical people remain intact. Towards the end of the talk, Jason also elaborated on executive functioning in autism, another fascinating area.

Lunch offered the opportunity for networking over some delicious original Indian food.

The afternoon was kicked off by Alain English, a brilliant poet and member of ALAG, who offered the audience an insight into his life and experience of autism through poetry. Very moving, this highly skilled performance eloquently brought home some the very real difficulties autistic people experience on a daily and ongoing basis.

This was followed by a fantastic talk on autism in girls and women by Dr Will Mandy from University College London, which explained how and why autism can look different in girls and women and might get missed by diagnosticians.

He discussed both different presentations and trajectories from boys and men but, all the while, making it clear that these are tendencies and that there are boys/men who present more like girls/women and vice versa. He also gave thought to the diagnostic tools used at present and concluded that he believes that it is best to have the same diagnostic tools for both genders. However, he felt that it is very important to know how to ask the right questions and listen to the answers carefully with a knowledge of how autism tends to present in girls/women.

Jennifer Barker related her own experience of autism and the ups and down she had experienced with her diagnosis. Two things stood out from her talk: first, how difficult it can be to realise one is different from most other people and the impact this can have on self-confidence and the second, that regardless of being autistic, it can be possible to have a meaningful and successful life if one has parents that love their child and believe in them.

The last speaker, Wendy Tuson, a Speech and Language therapist, gave an intriguing look behind the scenes of the social communication group she facilitates for the Whittington NHS Trust.

She explained how she learned what works and what doesn’t and why. Her group is very successful and has been going for several years now, offering people with Asperger syndrome or high-functioning autism a service that is only too rarely available on the NHS for such a client group. It was refreshing to see how much thought and care she and her co-facilitator seem to invest their work.

The conference was brought to a flamboyant close by Alain again who had listened carefully throughout the day and created a medley on the conference themes, which he put into poetry with an amazing finale performance. This is the piece he wrote:

Neurodiversity

Neurodiversity
It’s the reality
An unrecognised and misunderstood branch of society
Incorporating autistic people all
Across the spectrum
Who need to be heard

Who need to be seen
Be they men, women and everyone else in between
Trans, non-binary or queer

But there’s nothing to fear
For the rest of the planet
And everyone in it

We’re not a danger to you
We’re just different to you
But yet our identity
Places us in a minority

It causes us depression
Self-loathing and anxiety
We’re made to feel shame
Because we’re not the same
As other people

We are not ‘normal’
As if such a thing exists
In a world full of changes and twists
It’s constantly transforming

Life never stops evolving
Overstretched and under-funded services
Constantly add to our challenges
Of living with our differences
Not understanding non-verbal information
Hampers our communication
And our ability to listen
Leading to misunderstanding, stigma and isolation

A frightening, awkward and enraging situation
Rendering us vulnerable
Unaware or not reaching out
To the help that is available

It’s a trap in which we are caught
Having to mask who we are
Pretend we are something we’re not
We can’t talk about our interests

And we’re afraid to start stimming
The dancing, rocking and flapping
That help us to relax
Help to stave off meltdowns and panic attacks
That leave us in a sweating, shaking mess
In a state of total helplessness
But in spite of all our challenges
Autistic people have abilities
For managing the difficult sides of our nature
They don’t make our lives perfect
But they do make them better
Autistic people have so much to offer
Whatever it is
Engineering, science, politics or the arts
We have the skills to play our part
We will break down the barriers
Of ignorance and prejudice

You can’t get around this
It isn’t going away
Neurodiversity is here to stay!

Listed here are some of the feedback comments from the day highlighting the overall positive impression that it was a day well spent:

‘Thank you for the wonderful event yesterday! I had such a lovely day, we met some really interesting and inspiring people.’

‘A very big thank you to you and all your colleagues for your very hard work in setting up the conference yesterday. I found the papers very relevant to my experience as a person with Asperger Syndrome.’

‘Thank you for organising a wonderful event.’

I enjoyed the wide mix of topics and expertise and the fact that roughly an equal number of speakers were personally affected by autism compared to the number professionals who spoke. Hopefully soon we will also have a speaker who is both autistic and a professional in the field.

This would add yet another layer of depth to the day. It was also great to see that this was not a conference done about, or even to, autistic people by neurotypical people or a conference where only autistic speakers were welcome. Rather, it was a true collaboration between autistic people and non-autistic people and it didn’t matter who was what. All that mattered was to make the day a success and to improve understanding about autism and related issues and to help create a better and fairer world for autistic people.‘ By RR

Speakers

  • Dr William Mandy, Senior Lecturer at UCL in Clinical, Health and Education Psychology
  • Dr Jason Crabtree, Consultant Clinical Psychologist
  • Ruth Millman, Director Alongside Autism
  • Wendy Tuson, Specialist Speech & Language Therapist, facilitating social communication groups.
  • Experts by Experience: Alain English, RR, Jennifer Barker

Conference Presentations Overview

Gender identity and dysphoria in autistic people and approaches to supporting autistic individuals with gender identity differences 
Ruth Millman, Director of Alongside Autism

There is evidence suggesting higher rates of gender identity dysphoria and variance in autistic people. Although more research into this correlation and factors behind it is needed. This talk will explore what the existing evidence does suggest, including that autism spectrum disorder may present a unique experience to the formation and consolidation of gender identity, and that they may be differences in gender identification, and the social component of gender identity. We will also explore what best practice is saying about how to support autistic individuals with gender identity differences and what individuals themselves are asking for.

Lessons learned from facilitating communication groups for adults recently diagnosed with autism 
Wendy Tuson, Speech and Language Therapist, Whittington Health NHS Trust

This presentation will focus on the experiences gained from facilitating a communication group for autistic adults. Many group members have only recently been diagnosed. It will include information about the group’s general aims and aspects that have worked well and not so well.

The cognitive and memory abilities of adults and older adults with autism 
Jason Crabtree, DClinPsy PhD, Consultant Clinical Psychologist, East London NHS Foundation Trust

There is a suggestion that adults with autism have different profiles of cognitive and memory abilities compared to those without autism. However, research in this area is limited and focused on children and younger adults. Therefore, there is little understanding as to how the cognitive abilities change as adults with autism move into older adulthood. Understanding of cognitive profiles is considered to be important in terms of planning adaptations, support needs and contributing to accurate diagnoses.

This talk will provide an overview of some of the current research in the area, providing insight into relative strengths and weaknesses in the typical profile of adults and older adults with autism as compared to adults without autism.

Girls and women on the autism spectrum 
Will Mandy, DClinPsy PhD, Associate Professor UCL, Department of Clinical Psychology

Autism is more commonly diagnosed in males than in females. This partially reflects an underestimation of the true prevalence of autism in girls and women, arising from systematic biases in diagnostic criteria and clinical services. As a result, autistic females are less likely to receive an accurate and timely diagnosis, which reduces their chances of benefiting from appropriately targeted health care and educational resources.

This talk will consider why so many autistic women fly under the diagnostic radar. This will include the proposal that there is a female autism phenotype that is not well captured by current diagnostic criteria, which were largely based on male cases. In addition, initial evidence for environment contributions to under-diagnosis of females will be presented.

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