​Pathway to Support for Adults with PDA and their Families


​There is very little support or information available to adults with PDA and their families. However, the National Autistic Society do provide an abundance of information, guidance and support specifically tailored to adults on the spectrum.

While some of this advice may need adapting to make it more relevant for individuals with PDA the same principles for accessing support, finding out what options are available, which services can support you and what your rights are will remain the same.

​The PDA Society have already provided a support and advice resource that may be helpful to many parents of children with PDA, much of this information may also be beneficial to adults with PDA, their families and partners.  But, for ease of reference, the PDA Society have also produced this 'Pathway to Support' resource which we hope will be more directly targeted and helpful for adults with PDA, their partners and their families.
 

Assessment and Diagnosis

You may be wondering if you, or someone that you know has autism with a PDA profile. Perhaps you have read something about the condition, or someone else has mentioned PDA as a possible explanation that describes some of your own experiences or those of a person that you are close to.

It's quite common for people to have gone through life without a diagnosis of autism, feeling that somehow they don't quite 'fit in'. This is especially common for those who have a PDA profile of autism. Many people learn to cope with life in their own ways, although this can be hard work. They might be married or living with a partner, have families or successful careers. Others may be more isolated and find things much more of a struggle.

Some people may decide to seek a diagnosis and other people are happy to remain self-diagnosed. This is a personal decision and there is no right or wrong answer. If you feel that you or someone that you know may benefit from an assessment and formal diagnosis you may find the following information helpful.


Advocacy


​Some people with PDA may be able to support and advocate for themselves, but other individuals and their families may require and benefit from support in this area. The National Autistic Society provide information that can help individuals to become a more confident advocate for themselves and also provides signposts to organisations that can offer advocacy services for adults with autism.
  • Advocacy - The National Autistic Society  

Support Groups


​Some adults, who identify with the PDA profile of ASD, may have developed their own coping strategies throughout life. They may have a supportive family and / or a partner that can help them to navigate and cope with many aspects of daily life.  They may not feel the need (or may not meet the criteria required) to access certain services.

Whatever the personal circumstances are for an adult with PDA, it can still be comforting, and in some cases a lifeline, for individuals with PDA, and those who support them to connect with others who have similar difficulties and experiences. For many, this support can often be found online in Facebook support groups and forums. Of particular interest may be the following Facebook support groups.

​Identifying with the Experiences of Others


​Many adults and families also report how beneficial it can be to learn from, and be able to identify with, the experiences of other adults with PDA. There is now a growing amount of information online from adults with PDA which offers a valuable insight into what if feels like to live with PDA from the inside out. The following resources may be of particular help for this purpose.

Strategies


​Much of the information that is available about supporting individuals with PDA is focused on children.  While many of these strategies may remain true for adults with PDA they will likely need considerably adapting so that they are age relevant and beneficial for adults.  It is also the case that many adults will have developed their own positive self-coping skills and strategies which can be helpful for other individuals with PDA. In her blog, Riko, an adult with PDA, has written about her adult coping strategies and how these strategies may sometimes become tricky for her.

Transitioning to Different Stages of Life


PDA is dimensional, this means that it will affect different individuals to varying degrees at different times in their lives.

​Transitions such as, leaving school, beginning work, going to college, university or doing voluntary work will come at different times of life for some individuals with PDA.

Schools (mainstream or specialist) may offer placements (day or residential) to pupils until the age of 18. Colleges (mainstream or specialist) will usually be able to offer placements (day or residential) to students until the age of 25 and some individuals may decide to continue their education by accessing courses at University.

Following education there will likely be other transitions such as adapting to work, life at home either independently or supported by others. Individuals and their families may need support, advice and assistance to navigate these many changes, to understand what their options are and to secure the correct support if needed. The National Autistic Society provide lots of information to guide individuals and their families through these transitions.

Support from Social Care


Individuals with PDA may choose to live with their families, partners or on their own. However, some individuals with PDA and / or their families may be struggling to cope and would benefit from support that may be available from their local services. These can sometimes be easier to access if you have a diagnosis. The following links will help to signpost you to further information and services, where you may be able to find information about accessing support. 

Support from Health & Mental Health Services


​If you (or someone that you know) are diagnosed with autism, you may need support from your local health services at different times throughout your life. Your first step will usually be an appointment with your GP, they will then refer you on to the most appropriate team i.e. autism team, mental health team or an individual professional that can provide other services such as counselling or therapies etc. For some individuals, they may have transitioned from children's services to adult services due to their ongoing needs at that time.
  Mental health conditions may also be a concern for some adults with PDA. These may include depression, low self-esteem, self-harm, eating disorders, isolation & withdrawal, obsessive-compulsive disorder (OCD) and other related anxiety disorders. It is important to seek professional help if you, or someone you care for, develops additional mental health conditions, ideally from a professional who is experienced in mental health and the PDA profile of ASD​.

Our webinar on PDA and mental health issues - Dr Judy Eaton, explains some of the problems that individuals may experience in more detail.

Other services that may be able to offer free support, advice, counselling and possible therapies can be found below.
  • Mind - Provide advice and support to empower anyone experiencing a mental health problem. We campaign to improve services, raise awareness and promote understanding
  • Respond - Respond works with children and adults with learning disabilities who have experienced abuse or trauma, as well as those who have abused others, through psychotherapy, advocacy, campaigning and other support.

Complaining about Health or Social Care​

  •  ​Making a complaint about health or social care services - The National Autistic Society provide useful factsheets detailing how you can complain about the service that you have received from health and / or social care.
  • Health - Citizens Advice provide basic information about your rights to health care, the NHS complaints procedure, how much health care costs and provides signposts to other specialist agencies who can provide you with further help and more detailed information.

​Support and Training from Independent Services​

​There are now a variety of independent services that can offer training, in the form or courses and workshops, to parents and / or professionals who are supporting adults with PDA. Some of these services are also able to offer one to one support and consultancy with the individual with PDA, their family and those who support them. Please contact the services directly for further information.

  • Help for Psychology - can offer one to one support and therapy either at their clinic or via skype appointments. They also offer a variety of training workshops tailored to different audiences e.g. parents, professionals etc.
  • Side by Side Coaching - can offer adult coaching, family coaching and PDA training for parents and professionals.
  • Positive Autism Support - can offer young adults one to one support, family support and PDA training for parents and professionals.
  • Challenge Consultancy - can offer consultancy ranges from a) supporting individuals and their families within their own home environment to function and manage their day to day lives b) training courses and c) an enablement team (support workers for one to one carers)

Benefits


You may also be entitled to certain benefits such as Personal Independence Payments (PIP) and / or Employment & Support Allowance (ESA).

​​Encounters with the Law

  • Encounters with the Law - The National Autistic Society provide information about being the victim or witness of a crime, police interviews, being a witness in court, how parents and carers can help, and your rights in prison
  • Offenders Helpline - For advice and support on all aspects of arrest, going to court and prison​

Helplines


The National Autistic Society and the PDA Society also provide helplines for adults with PDA and their families.

Further information about PDA can be found in our extensive list of resources.


Please note that the PDA Society are not making any recommendations nor is responsible for the content of sites and links that are external to the PDA Society.

Please contact us if you discover any broken links.