Autism and Ageing Kiranpreet Rehal Autism & Ageing Project Manager Funded by the Clothworkers Foundation

Outline What do we know about autism and ageing? What changes as people with autism get older? What is being done by the NAS? Planning for the Future

What we know so far… Everybody’s health and welfare needs change as they age. They may need Home visits from carers or service providers Day services Increasing medical care Hospitalisation Supported or very supported housing Care homes People with autism often develop other health issues, such as depression, anxiety and physical conditions Social isolation will increase without support networks Many older people are undiagnosed or misdiagnosed, particularly older women.

Support for people with autism as they age There are too few trained advocates for older people with autism As parents become too elderly to provide support, many siblings take on greater support roles. They get little support themselves. Service providers need information about autism and ageing

Recent Surveys “I Exist” 2009 Detailed survey asking 1787 adults (18yrs and over) about their lives 605 people aged 40yrs or over 71 were 65ys and over

Recent Survey “The Way We Are” ,938 people with autism responded 355 over 45 (120 over 55) 5,535 carers responded

Findings from ‘The Way We Are’ 71% of over 45s have never had their needs assessed Of over 55s, ¼ diagnosed before 40 years old 85% of over 55s have been in paid employment at lest some of the time since they were 16 years old 15% have never been in employment 41% of them have experienced a total of more than 10 years without employment or education during their adult life 96% of parents are worried about their son/daughter’s future – 35% have made some plans

A familiar story “The loss of my mum had a devastating effect on me. My mum would phone me up often and be interested in what I was doing and how I was. Since I lost her, I feel like I’m bobbing about on my own in the middle of an ocean.” Lizzie “I definitely am feeling both loneliness and isolation. This is pretty common in elderly folk generally, but in my case it’s also largely engendered by my introspective nature.” Freddie

Recent Survey “We Exist Too Valuing the Contribution of Siblings” siblings of people with autism over 40

Key findings from “We Exist Too Valuing the contribution of siblings” Elderly parents continue to care for their ageing children without sufficient help or knowledge of where to find help. Fewer than half of siblings who responded have planned for the future support of their brother or sister with autism with parents. Siblings are more than willing to help support their brother or sister with autism out of love, but few siblings are able to take over the full responsibilities of their siblings.

Key findings from “We Exist Too Valuing the contribution of siblings” Nearly half of siblings feel that they do not have a choice about whether or not to support their sibling and feel unsupported by the local authority. Of those who contacted the local authority, 63% rated their response as poor. 89% of siblings are worried about the future for their brother or sister with autism. Siblings want help with finances, local support groups, domestic help and befrienders. Half of siblings regarded their brother or sister with autism to be socially isolated.

UK Policy and Practice Rewarding and Fulfilling Lives (2010) (England and Wales only) Implementing Rewarding and fulfilling lives (2010) The Scottish Strategy for Autism Welsh Assembly Government Autism Spectrum Disorders – A guide for people working with Older adults, Dec 2010 NICE Guidelines

Raising awareness and campaigning for change Policy and Parliamentary officer - Ageing Autism in Maturity Action Network Conference – 10 th Oct 2012 “I have a daughter who’s 40. She lives alone but she’s very dependent on emotional and practical support. I’m 80 and my husband’s nearly 87. I think when we’re not here, she’ll be a terrible burden for my son, who’s got a young family and that’s not fair.”

Welfare Benefits The Government plans to increase the state retirement age for women and men to: age 66 by 2020 age 67 by 2028* age 68 by 2046* Entitlement ends at state retirement age: Employment and Support Allowance Incapacity Benefit Severe Disablement Allowance Jobseekers Allowance *Proposed by government, not yet law

Welfare support after retirement age State retirement pension Pension Credit Attendance Allowance Housing and Council Tax Benefit

Other benefits on retirement Government schemes which can help people in retirement: Winter fuel payments Cold weather payments Homeheat Free prescriptions and other health costs Television licences Bus Pass Community Care Grants (CCGs)

Why do some people with autism experience social isolation? the person may prefer to be on their own and enjoy their own company adults with autism may want to engage with others but lack the skills to do so some people with autism find it difficult to maintain contacts due to a lack of understanding of small talk and other conventions of social behaviour. some people with autism may need a higher level of support for activities a person with high-functioning autism or Asperger syndrome may live independently, without family, support workers or a social network

How to combat social isolation Looks for way of supporting interaction Managing changes in routines Strategies for managing anxiety Exploring social skills groups Support to get involved in social activities Look for social or special interest groups

Practical support from the NAS Befriending and mentoring Support for siblings Autism in Maturity pages on NAS website Information sheets Autism Helpline Community Forum Autism Alert Cards

Support for Professionals Autism and Ageing Project Exploring the needs of health and social care professionals who support older people with autism Developing new resources to help people providing care to ageing people with autism Resources to be available October 2013 Network Autism Information sheets Research reports

So what do people with autism want, as they grow older? Are we asking the right questions to older people with autism about their lives? How they live now: what do they value and what would they change? What sort of support do they want, to plan for the future? Where do they want to live, if they have increasing support needs? What sort of social life do they want in their older age? Have they made plans for the future? How do they want to receive information? Do they have supportive networks or family? What are their hopes for the future? What are their fears? Will they have financial resources beyond state benefits?

Planning for the future What to plan? Support for adults with autism as they grow older Transferring support roles from parents to others Why now? No one knows what’s going to happen in the future Parents have accumulated expertise Parents can be involved in planning Planning now prevents having to cope in emergencies. Planning now means changes can be introduced gradually. Who should be involved in planning? Person with autism and everyone involved in supporting them Reviewed on a regular basis

What to plan? Where will family member with autism live in the future? Who will provide support if needed? Domestic routines and tasks How to access advocacy if required? Financial planning, trusts, wills, etc Health plan – document conditions, general family history, medications, doctors, therapists etc. Keep updated Social life and contacts Maintaining routines, hobbies etc Regular community care assessments List of all contacts involved

Any Questions? Thank you for listening