The Black Country Learning Disability and Autism Board has responsibility for oversight and delivery of the Learning Disabilities and Autism Programme (LDA), a national programme to achieve the ambitions set out within the NHS Long Term Plan for people with learning disabilities and autistic people.

In 2020, the Black Country LDA Board were invited to bid for targeted national funds to improve the experience of autistic people seeking autism diagnosis, pre-diagnostic, and post-diagnostic support.

The Black Country proposed an approach to use the funds to work in co-production with the autistic population, including families, carers and professionals working with autistic people, to hear experiences of what life is like in Black Country for an autistic person.

It is not a strategy but a reflection on autistic people’s experience of life in the Black Country to enable public services and other organisations to consider how they can improve the lives of all autistic children, young-people and adults. 

All-Age Autism Framework Webinar

Learn more about the All-Age Autism Framework in this webinar.

Meet the team

Watch Callum and Tim, AAAF project officers and experts by experience, share their involvement in the project and how they are inspired to make a difference for the autistic community in the Black Country.

Co-Production Themes 

Below you can find what has was shared and heard at each themed workshop, which provides a rich insight into the experiences of autistic children, young people, and adults in the Black Country. It also provides insight into the experiences of parents and families.

 

There is something about living life as an autistic person is a struggle:

  • Struggle to get a diagnosis
  • Struggle to be able to make the most of a spiky profile – to identify and make most of strengths and to identify and develop other areas that are weaker
  • Struggle to be believed
  • Struggle to be accepted
  • Struggle for individuals and families to get support before diagnosis, during diagnostic assessment and following diagnosis
  • Struggle in schools
  • Struggle to be seen as an individual ‚Äč

 

There is something crucial about diagnosis:

  • Without a diagnosis individuals and families cannot get support
  • The diagnostic assessment process is long and impacts child/young person’s education
  • Without diagnosis other mental health challenges emerge e.g. anxiety, depression as cannot understand the world and self
  • Diagnosis needs to take account of female indicators of autism
  • Sensory assessment is very patchy but would help people and families to understand how to reduce stress and anxiety for individuals
  • Once diagnosed individuals could reflect on how things now made sense in their lives – knowing helps
  • Self-identity is crucial

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There is something about the routine of school/college/work which helps maintain contact with others

•    During holidays when routine stops some individuals struggle to maintain contact with others and can become lonely 
•    End of school/college/ work can mean the end of relationships and contacts. Some individuals will not retain contact as associate with the environment 

There is something about the energy it takes to be social, to attend school/ work/college 

Individuals exhausted after day in school/college/work and just want to remove themselves from interactions which can lead to isolation and loneliness
•    Masking that takes all the energy
•    Sensory overload is exhausting 

There is something about the range of social activities that people are interested in 
•    Cinema 
•    Museums
•    Shopping 
•    Sports 
•    Martial Arts 
•    Playing videogames, tabletop games 
•    Musical Band
•    Drama & Theatre Club
•    Writing Club
•    Book Club 
•    Dancing
•    Arts and Crafts
•    Tabletop Board and Card Games
•    Autistic Friendly/Inclusive Night Life
•    Farms
•    Physical activity spaces

There is something about the difficulties in finding and maintaining social and activity groups 
•    Needing to build up confidence to attend groups and maintain them 
•    Autism specific groups are hard to find 
•    Participants wanting to set up their own groups with other participants 
•    Parents needing support to find and access groups for autistic children 

There is something about public transport and access to groups 
•    Public transport anxieties and sensory overload is a barrier to social life and access to activities 
•    Accessible safe spaces can help 

There is something about understanding and supporting individual preference and communication needs 
•    Hot communication: Direct talking,face to face and/or phone conversations
•    Cold communication: Indirect talking, email, text, social media 

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There is something about understanding communication needs and preferences to help with relationships 
•    Parents express using a different language, wearing different hats to communicate with their autistic child 
•    Some schools able to support autistic children well with their communication needs but not universal 
•    Communication needs for other activities outside school often rely on parents/families 
•    Teach people what is a friend? What is a safe friend?
•    Teach younger people about autism earlier, would help with understanding later in life

There are different communication concerns that impact relationships 
For example: 
•    One individual finds it hard to engage in a conversation as sometimes people speak too fast
•    One feels that by the time they think of a point to add to a conversation, it has taken too long and the natural part to say it has passed, feels like they’re missing out
•    Someone has a hard time understanding subtext to conversations
•    Someone mentioned having a hard time identifying emotional context of things
•    Overthinking about conversations and relations with others can cause anxiety and make you feel exhausted.
•    Not wanting to talk to people you have close bonds with because you know how involved it would be. The path of least resistance is not talking to them, this ends up as the worst path because it leads to isolation. It is easier to not talk in the moment but in the long run it might make things worse
•    Conversations feel like you are running two different scripts: The actual conversation and what you should be doing to make it seem like you are listening e.g. nodding, eye contact.

There is something liberating about not having to mask with a close person/ relationship 
When you have a close person/relationship who knows you well it means that you no longer have to mask, which can be exhausting.
Spoons theory application to autism
o    You only have X-amount of spoons of energy a day
o    As an autistic person some things take more spoonful than others

There is something about dealing with conflict and misunderstandings 

•    Anxieties after experiencing a melt-down in front of people 
•    Overthinking and catastrophising after conversations or reading messages 
•    After heated conversations, maybe take a break and return to the conversation fresher of mind
•    Having transparent conversations where we say what we really mean, to avoid any miscommunication and confusion for all parties involved

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There is a concern for parents about their autistic child’s future 
•    One young person told they were unemployable
•    One parent indicated that struggled to get child through each day; to get child to school; to access suitable therapies; to support after school as so exhausted 
•    we won’t be around forever

Parents have dreams and ambitions for their autistic children and young people
To be independent; to feel safe in their own home; to be in society 

There is worry amongst young autistic people about the opportunities open to them in life 
•    Society is not geared up for us 
•    Employers and recruitment processes are not accessible/ adapted to support autistic applicants and employees

Being autistic does not stop you from dreaming
Individuals mentioned how they wanted to learn how to drive; want to work in theatre, it is a passion of theirs since attending a theatre club ran by an autistic individual

There are concerns from adults diagnosed late in life 
•    “It would be a tragedy if future generations of autistic people went through trials and tribulations that I've gone through because that would mean that we've learned absolutely nothing.”
•    Feels like hopes and dreams have reduced as time as gone on
•    How can you have dreams if you have them taken away?
•    What stops autistic individuals the most is people not understanding how we think and how we are a benefit and not a hindrance 

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There is something about the school environment that could be better to support autistic children and young people 
•    School environments can be loud and shouty and not ideal for sensory needs of autistic children and young people 
•    Safe spaces available throughout schools even for children & young people without confirmed autism diagnosis
•    Creative subjects at risk in many academies that often help autistic children and young people
•    Rules and consequences create situations of microaggressions that can adversely impact autistic children & young people 
•    Early preventative measures in all schools would reduce school avoidance 
•    Good practice examples available e.g. one-page pupil profiles; training on autism for teachers and support staff 

There is something about early and sensitive assessments to prevent needs not being supported at early stage in education 
•    People had experience of no support for their child until eventually diagnosed 
•    Children diagnosed with mental health problems before getting an autism diagnosis 
•    Several individuals had experience of being late diagnosed autistic as they were not seen as problematic children in school 
•    One adult remembers how they became school avoidant when they were younger, some days they just did not feel up to going in, so they faked being sick. Wishes mental health would be treated as real as physical health; If I am burnt out; too depressed to leave the house for work or school I should be allowed to be off ill

There is a significant issue about employment support 
•    Later diagnosed adults reporting significant difficulties throughout their employment experiences 
•    Recruitment practices are not adjusted appropriately for autistic people e.g. interviews ‘Feels like they are looking to see if you will fit in rather than at your skills’ 
•    Suggestion that interviews based around knowing your neurodivergence with a panel perhaps with one member who has neurodivergence to reduce bias 
•    Burnout is a significant risk in autistic employees and employer’s knowledge and support would be helpful to prevent loss of employees 
•    Parents of autistic children also experienced lack of support by employer when exhausted supporting child’s needs 
•    Good ideas suggested included 3-4 day working weeks and more flexible working practices to reduce burnout; 
•    Noted that people job hop around a lot
•    Appropriate support when changes planned in workforce to prevent catastrophising and anxiety
•    Job centres are not a great place to force an autistic person every week if unemployed: 
o    Requiring the amount of work feels unfair
o    Meeting every week or two feels like a lot, especially because they prefer in person meetings
o    But if you make it known you need more help they can give additional support
 

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There is something about recognising individuals needs and choices about their home and that they may change 

  • Worried supported living is more of a business model, they want constant residents so they have constant pay
  • It’s not perfect. But it does give me time and space here. 
  • Having own space is very important; Did not want to be going back home to living with parents. 
  • What happens next? He wants to move into a place of his own, with “less” support
  • Doesn’t think supportive living is the next option. Wants to build independent living skills 

There is something about supported living including support to independence 

  • Building skills
  • Monitor mental health
  • Eating well and healthily 
  • Needs more of a “buddy” rather than a carer
  • We need to be able to have independence outside of it so we aren’t relying on it
  • Building us as a person, building confidence, our well-being

There is much about providing early preparation and training for living independently 

  • We need more practical knowledge in schools
  • We need to have more support on how to live
  • Need help on banking, money management, and life skills

There is something about the quality, consistency and training and awareness of professional staff in homes

  • Feels like there isn’t enough training
  • Don’t feel comfortable enough with their training
  • there needs to be more work done
  • Consistency of care and support
  • You need to have the same staff, so you can build a bond with them
  • ‘I need a consistent support, mental health. If in crisis he can’t get the same support when he needs it, different people each time’
  • There’s too many gaps
  • It would be nice to ask one single person, and it then gets done. 
  • Too many different staff, can’t create a bond

There is something about housing providers and housing departments being autism aware and providing bespoke support 

  • Needs more specialists who are trained to be available. Everyone should be trained, but there should be a specialists trained to a higher level. And autistic people would be assigned to those specialists
  • Need help organising payments 
  • Housing group is unhelpful, almost sound threatening “do you want to live here or not?”
  • Has mentioned she is autistic, feels like nothing has happened
  • ‘Wants to run away when something happens’
  • ‘Doesn’t want people into her house even if it’s to sort something out’
  • ‘Has family locally, but not close enough and no one can help her’

There is something about the value of personal assistants 

  • Has a PA But told has to give up direct payments if she moves somewhere else
  • Our trusted individual if we put too much trust and usefulness in them, if they go then we will be stranded
  • Has personal assistants, to help with shopping and community activities. 
  • They’re very specialised, a strong bond
  • If feels uncomfortable can get the support needed

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There is something about how people find out about our rights?
What we understand about our rights and how do we make sure that other people have that knowledge 

Not many people had heard of the autism act and why is that? How do we share that information? Is it a valid piece of legality? 

  • “Listening to all of this, it just makes me feel that Autism Acts needs more teeth. Basically, doesn't it? That's what. It should be in legislation and then all of these other areas should have to respond. So, whether it's housing, whether it's employment, whether it's education, they should actually respond”. 
  • "In Wales they've got the code of practice which they've got so that people have to adhere to the code of practice for the autism so I think that you know there's a potential to push nationally in England for something similar."

Discussion around the equalities act and how it worked

  • Particular concerns about work duties on the employer and on the employee. 
  • Went into more detail around indirect and direct discrimination, this interested a number of others within the session

Human Rights Act/ Mental Health Act
An expert by experience describes the laws are like a house, so the Human Rights Act are the foundation of the house. It's like the underneath and then every law has to be built on that. For example, the Mental Health Act it is like a window or wall this applies to all acts, including internal policies from Services like mental health unit, and that's what a lot of people miss out or don't understand.

There was something about how we can better understand our rights 
There was a discussion around producing a document or website that would guide you to the relevant information needed to understand human rights and other legal rights such as the equality and autism acts. 

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Using the findings shared and heard at the workshops provided a rich insight into the experiences of autistic children, young people, and adults in the Black Country. 


Using this summary, the plan is to create a lens that focuses on each of the themes. Participants at the final workshop were encouraged to add to these experiences and to say what public services and other organisations could do to help people live their best lives. 

Key Documents

 

Get in touch

For information and to get involved with the All-Age Autism Framework, email: bchft.autismroadmap@nhs.net