Prynhawn Da a croeso/ Good Afternoon and welcome.
And thank you to Willow Holloway for inviting me to sponsor this Going Gold 2019 event, which joins together the Autistic Women's Empowerment Project and Autistic UK with other user-led organisations to promote Autistic Acceptance and strengthen the Autistic Voice.
Today is World Autism Awareness Day , an internationally recognised day taking place on 2 April every year.
This falls within the Autism Awareness Week, 1 - 7 April - a full seven days where people across the UK are encouraged to take part in activities to raise awareness of Autism.
However, this event is about moving beyond awareness to Autistic acceptance and empowerment.
Autistic UK uses the colour gold because of its chemical symbol Au' and because they want a society that allows the strengths and talents of Autistic people to shine.
Autistic UK and The Autistic Women's Empowerment Project are grass -roots, voluntary, user led organisations, which rely on donations and self-funding to cover the cost of their work.
This event brings together Autistic individuals, advocates, campaigners and supporters with policy makers and professionals working within the field of autism, to discuss the lives of autistic people in Wales.
This is an ideal opportunity to network with Autistic people and learn more about their needs and hopes for the future.
The overriding aim of the event is to build links and relationships between Autistic adults and the bodies that provide services here in Wales, and to promote the inclusion of all Autistic voices during the development of policy and the design of services.
Although Autism is neither mental health nor learning difficulty, too often people with Autism fall between stools as there is nowhere else to go.
As I stated when proposing a Wales Autism Bill in the Chamber in October 2016, “the Autism Community will not receive the support they know they need until there is statutory underpinning and accountability – and we move beyond consultation to a direct role for professional and Third Sector bodies, and the Autism community, in design, delivery and monitoring.
Every day, my Office is contacted by Autistic people suffering anxiety, pain or trauma following their engagement with public services.
They express their concern to us about a lack of autism understanding and acceptance, especially with regard to overload, stress, anxiety, and difficulties around change.
My staff and I have to repeatedly emphasise to Public Bodies:
- That not having enough time to process information can feel very confusing for an Autistic person. As an Autistic person quoted by National Autistic Society put it, “in my case, I’ve always compared it to a computer crashing. When people haven’t given me enough time to process information, it can lead to me feeling anxious as well as confused due to not understanding what’s going on and, in the worse-case scenario, I can have a meltdown”.
- That ‘many autistic people have sensory differences. They may be over-sensitive to some senses, under-sensitive to others and often a combination of both. For someone who is over-sensitive to touch and sound, people brushing past them and a loud announcement at a train station could cause pain and sensory overload, leading to a meltdown’ - and ‘ Consistent, predictable routines and structure are often very important for autistic people and a change to routine can be very distressing’.
- That, as “Inns Of Court College of Advocacy” guidance states: “Autism remains a condition predominantly associated with males, however, there is increasing awareness that this is likely to be due to the under-recognition of autism in females… It has been suggested that women and girls with autism are better able to engage in social situations because they are likely to observe and copy others in their social skills and/or use of language. Such strategies may mask any difficulties that they have and make them appear to be more able than they actually are.”
This Inns of Court guidance also states:
‘In order for people with autism to communicate effectively, there must be: early identification of their needs; the acquisition of comprehensive background information about the individual; careful consideration given to the communication environment; appropriate preparation of the individual for what is expected and a planned and flexible approach taken’.
‘Consideration must be given not just to the types of questions asked, but also to the manner of how this is done. Timings of evidence-giving, changes to scheduling and environmental factors (such as busy buildings) are all likely to affect the overall quality of a person’s evidence’.
- And that an autism meltdown is not the same as a temper tantrum. ‘It is not bad or naughty behaviour and should not be considered as such’. When an Autistic person is completely overwhelmed and their condition means that it is difficult to express that, it is understandable that the result is a meltdown. As National Autistic Society states “ So if someone is having a meltdown or not responding to you, don’t judge them’….. ‘Give them some time - it can take a while to recover from an information or sensory overload’….. ‘Make space’.
The findings of the 1st March 2018 Welsh Government publication, 'Evaluation of the Integrated Autism Service and Autistic Spectrum Disorder Strategic Action Plan: Interim Report' included “Success requires a co-productive approach involving staff, service users and carers in the design, implementation and evaluation of the Integrated Autism Service”, but there are “concerns that the ‘top down’ approach...has stifled this”.
It is therefore incumbent on Public Services to establish and adjust to an autistic person’s social and communication needs, recognise the causes of an Autistic persons heightened anxiety/meltdown and therefore avoid treating the Autistic person as the problem.
As we heard from an Autistic Autism advocate at a meeting of the Cross Party Autism Group in 2018 “there is too much focus on interventions based on behaviour, not what is driving this behaviour. We need early recognition before Autistic people reach crisis point. The first thing to ask is ‘are they in pain’. Then ‘Why are they anxious? Why are they in fight or flight mode?’ ”.
As the mother of an Autistic man who committed suicide in 2018 told me “he appeared just a quiet bright young man – they don’t see the struggle these kids go through every day to survive in a neuro-typical world”.
Typical of many, a mother told me that her thirteen year old daughter had been out of education for four years due to lack of knowledge and understanding of Autism.
Another told me that her Autistic daughter is 240 miles away in a Mental Health hospital as a result of years of anxiety due to a lack of understanding. Another that “early recognition of Autism is vital. My eleven year son never received early intervention and will have a much harder life in consequence”.
Others stated, for example, that “being Autistic is like being a non-person,” and that “people on the autism spectrum have a huge contribution to make to society but not when they are floundering without proper understanding, support and opportunities”.
Speaking personally, I deeply regret that the Autism (Wales) Bill did not proceed past the Stage 1 proceedings in the Assembly in January.
As I said in that debate “Autism must have a statutory identity in Wales – with specific duties placed on Local Authorities and Health Boards” – where “reliance on the Welsh Government’s revised ASD Action Plan and Integrated Autism Service otherwise risks more of the same”.
Last October I spoke at North Wales Integrated Autism Service’s first Wrexham Community Autism Support Event.
Referring to the presentation by the North Wales Integrated Autism Service at the Cross Party Autism Group meeting I Chaired in Wrexham last September, I stated that:
“Attendees were informed that following a referral, support could be provided in the form of information and advice and, in some instances, direct support.
“Attendees also emphasised that failure by those providing public services for autistic people to first give careful consideration to the communication environment and the autistic person’s communication needs can cause confusion for the autistic person and escalate their anxiety”.
I also referred to emails recently received from Autistic people in North Wales, which included comments such as:
-‘A meeting to ensure an agreed written protocol of what will happen is very important because he will fully know what to expect and therefore this will partially reduce his level of anxiety.’
-‘We want the wider issues of discrimination and failure to meet the Equality Duty to be formally addressed in respect of Patients on the Autism Spectrum and with difficulties in social interaction and communication. Policy, practice and staff training and development are still not addressing the many very poor experiences that autistic patients experience when they use public health services.’
- and ‘I thought it would be a face to face meeting. I really find the phone difficult, both from a language processing point of view, anxiety, and through sensory/hyperacuity difficulties. Unfortunately, putting the responsibility to make the call myself has been too much, as I'm sitting with the phone in hand but can't even think how to start the conversation.’
Responding in the Assembly Chamber to last September’s Statement by the Cabinet Secretary for Health and Social Services, on ‘The Autism Updated Delivery Plan and Autism Code of Practice’, I highlighted the need to establish the communication needs of autistic people first - and quoted a constituent who had written to me the previous weekend stating:
“Many of us struggle with meeting strangers, especially in alien places. We struggle to communicate our needs effectively by phone, in writing and e-mail. We have been unable to obtain effective advocacy on our and our children's behalves despite us detailing our processing difficulties. It often takes us a long time to process information verbally or in writing without support to understand and interpret correctly, despite many of us appearing very articulate”.
As Autistic people tell me, if we are to improve their lives, the Welsh Government and Public Bodies must do things with them rather than to them and recognise that too many of those involved in the delivery of services for Autistic people will continue to get it wrong until they start acting upon the knowledge and expertise in the Autistic community itself.
In order to be person-centred, services now need to change to be more flexible, working with people and their families to find the best way to provide their care or support.
In 2013, my Member Proposed Bill on Community Care (Direct Payments) (Wales) was designed to offer carers and service users choice, control and independence - allowing people to choose whether they want to be in control - and giving them the support to do this.
The Deputy Minister at the time stated that she would like the principles in my Bill to be taken forward in the Social Services and Wellbeing Bill – and I therefore agreed to withdraw my Bill and work with the Welsh Government on this.
The subsequent Social Services and Wellbeing Act Part 2 Code of Practice states “This puts in place a system where people are full partners in the design and operation of care and support. It gives people clear and unambiguous rights and responsibilities.”
It said that “Local authorities must seek to empower people to produce innovative solutions through local networks and communities” and that this “means putting robust arrangements in place to secure involvement of people in the design and operation of services”.
The well-being objectives in the Well-being of Future Generations (Wales) Act also include people contributing to their community, being informed, included and listened to.
The 5 Ways of Working that the public bodies listed in the Act must demonstrate in order to show that they have applied this principle include:
-acting to prevent problems getting worse or from starting in the first place,
- considering how actions in one area may impact on other areas,
-and involving the people that services or activities are going to benefit or affect from as early a stage as possible.
The Autistic and Autism Communities are therefore looking to the Integrated Autism Service to champion a social model approach which avoids medical model language, and engages with Autistic people and their families/carers in order to tackle the discrimination they face.
If we are to have true integration in services for the Autistic community, then we must become more flexible in the delivery of services and see the world through their eyes.
As we also heard at January’s “Autism: Future Employment” conference in Wrexham “we must highlight employers that are already benefitting from the Autistic talent pool and identify support that employers can access to help breakdown barriers and see the Autistic ability”.
As Willow states, today is about supporting and empowering Autistic individuals and getting the Autistic voice in the mainstream.
I therefore look forward to hearing from an excellent line up of speakers about how Autistic led organisations want to work with the Welsh Government and policymakers to build greater understanding of the needs of the Autistic Community across all age ranges.