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The following is a summary of Dr Judy Eaton's talk at the PDA Society Conference in Birmingham on 18th April 2018

Judy opened by sayings that people often ask her “what is this PDA? There was never this PDA when we were younger. Where were all these people?”. Her response is that actually they have always been there, and that she has found it both interesting and a privilege to talk to adults with PDA about their experiences.

Introduction

Judy shared a case study to highlight the need for early understanding of PDA and the urgent need to educate other professionals about the condition, particularly those working in adult services:

James, a 41 year old man whose parents now feel PDA accurately describes, had received a diagnosis of autism as a child. Since leaving his specialist residential school for children with autism, where he was bullied, assaulted and was very unhappy, he has been sent to two different prisons and 7 different secure hospitals. He was placed under section 37 of the Mental Health Act, and subsequently detained under section 3 of the Mental Health Act with other patients who required very different management regimes to him. He was often very vulnerable and conditions there made him extremely anxious and unhappy. His parents have had to fight over the years with endless complaints and challenges to try to have his needs appropriately supported, but still have no clear social care package for him nor a psychiatrist or mental health team who fully understands his condition. He is now living back at home again, but having been institutionalised since 2006 he lacks confidence in terms of independence skills and communicates the effects of years of confinement with absolutely no control over what happened to him through challenging behaviour and meltdowns.

Judy hopes that better awareness of the PDA profile amongst professionals who work in adult services will prevent others going through the same experience as James in the future.

Judy explained that the aim of her presentation was not to scare people or raise unnecessary anxiety, it’s simply to make people aware of the possible difficulties which may occur as individuals with PDA reach adulthood and to underline the importance of early identification and intervention.

Understanding PDA

Judy has been involved in the assessment of approximately 250 children and a smaller, but growing, number of adults over the last two years. She said that a lot of adults are recognising the same profile in themselves when they come to have their children assessed. This has given her and her team an excellent opportunity to learn more about how PDA presents both in children and in adults. They now feel that PDA is a spectrum condition with some individuals being more ‘extreme’ than others. They believe that there are ‘passive’ PDA people who quietly resist demands and internalise their anxiety and ‘active’ PDA people who are more likely to react with anger or aggression when faced with demands.

Research into adults with PDA

Judy reported that there is very little research into how the PDA profile develops as people reach adulthood but the PDA Society has been pulling together the studies on PDA in adults which have been published and the lived experiences of those who have shared their story.

She said that many adults have come across PDA when searching for an explanation for their own difficulties or have recognised the features of PDA in themselves whilst going through the diagnostic process with their children. Unfortunately some have suffered from significant mental health difficulties and have been misunderstood or misdiagnosed with a Personality Disorder. Some, like James in the case study mentioned, have been sectioned under the Mental Health Act.

There are positive stories of adults who have found a way to manage their difficulties and have embraced who they are and have gone on to achieve what they wanted to, living a happy and fulfilling life, but she said this is often dependent on whether they have received the right level of support and understanding from those around them.

Survey results

Judy reported that she set up a quick, non-scientific survey via a PDA support group for adults on Facebook. The response was excellent and Judy thanked those who took the time to respond. She asked that people treat the results with caution and see it as a pilot study:

1. Question: Do you have/believe your adult child has PDA?

• Yes   89%
• No   20%
• Don’t know   1%

2. Question: Do you or your adult child suffer from mental health difficulties?

• Yes   88%
• No    6%
• Don’t know  6%

3. Question: What difficulties have been experienced?

• Depression/anxiety
• Obsessive Compulsive Disorder (or obsessive compulsive thoughts)
• Eating disorder
• Psychosis/dissociative disorder
• Bi-polar affective disorder
• Self-harm
• Suicidal thoughts

4. Question: Have you or your adult child received support from Mental Health Services?

• Yes   58%
• No   42%

5. Question: If yes, has this support been helpful/appropriate?

• Yes   23%
• No   52%
• Don’t know   25%

6. Question: If yes, did the professional working with you have any knowledge of PDA?

• Yes   10%
• No   60%
• Don’t know   30%

7. Question: Are you or your adult child in either education or employment?

• Yes   55%
• No   45%

8. Question: If yes, has this proved difficult to maintain?

• Yes   84%
• No   16%

9. Question: Do you or your adult child manage to live independently?

• Yes   51%
• No   49%

10. Question: Are you or your adult child in receipt of any benefits (e.g. Universal Credit, ESA or PIP?)

• Yes   54%
• No   46%

Judy said that this brief study was hopeful in some ways, but much more awareness-raising was still needed. She felt that the number of people who haven’t received support from Mental Health Services (42%) was quite worrying, as was the number who felt the support they had received from mental health service hadn’t been helpful/appropriate (52%). She said the results to the question asking if the professional working with you had any knowledge of PDA was scary (only 10% said yes) and that this reflects the fact that psychiatrists in adult services aren’t trained in neuro-disability or neuro-developmental conditions. She thought that 55% of people being in education or employment was quite positive. Judy said that the 84% who said education or employment had been difficult to maintain demonstrated the need for awareness raising and reasonable adjustments in the workplace.

Why might mental health issues develop for adolescents with PDA?

• Rejection and bullying by peers
• Vulnerability to peer pressure
• Poor (or poorer than expected) academic achievement - she said this is a theme which comes through quite a lot. They are bright and intelligent but for a variety of reasons, they don’t always achieve what other people think is their academic potential
• Poor sense of self and identity

Why might mental health issues develop for adults with PDA?

• Poor socio-sexual knowledge and vulnerability
• Difficulties with social communication
• Poor social imagination and inflexible thinking
• Reduced opportunities to develop intimate relationships
• Vulnerability to peer pressure
• Use of alcohol or recreational drugs to try to feel more socially comfortable (although this actually makes them more vulnerable)
• Difficulties holding down a job
• Struggles to manage money and the demand to pay bills on time

Anxiety and Depression

Judy estimated that the number of people with PDA also suffering with anxiety is higher than the published figures cited for those with autism across the board which is 70% of people. She said that teenagers with autism are at particularly high risk of developing features of depression and that friendship and school difficulties are additional risk factors. Co-morbid conditions such as Tourette’s Syndrome and OCD can add to feelings of alienation and difference and will be exacerbated by anxiety. In young people with PDA, she said that anxiety will have been such a core feature of their presentation for most of their lives, it is easy to see how this can progress once they reach their teenage years, with all the added academic and social pressure this involves.

Judy explained that anxiety and depression can present as ‘lower level’ issues such as negative thinking, low self-esteem, social isolation and withdrawal and that school refusal or school exclusion can add to the problems caused by isolation. She said she is saddened by the number of young people she has worked with whose bedrooms become their entire world and their only safe place.

She said that more serious problems or even mental health crises can develop if the young person begins self-harming or develops suicidal thoughts or ideation (when you actively make a plan to commit suicide).

Psychotic Episodes

Judy explained that for some individuals the anxiety levels become so intense that they may experience brief ‘psychotic’ episodes when they may report hearing voices or seeing things which are not there. This is very scary for the individual as well as for those caring for them. She said it’s almost like a breakdown, when things have got too much.

She said that some people may become so overwhelmed that they ‘dissociate’ or appear completely shut off from those around them. During these times, the individual can be difficult to reach and communicate with. From the research Judy has been doing, she said it appears that the threshold in PDA for the ‘flight, fight or freeze’ mechanism is very low. She explained that if you can’t fight back (fight) or run away (flight), you go in on yourself and withdraw (freeze) and for some people shutting themselves off can be the safest place to be. And for those with PDA who have elaborate fantasy worlds, she said it can be a much safer place to be than the actual real world they are in.

Dissociative Disorders

She went on to explain that Dissociative disorders fall into three different categories

• Dissociative amnesia - when you forget chunks of things
• Dissociative Identity disorders - used to be known as split or dual personality and Judy highlighted that she has met a number of adolescents with PDA who have a number of different personas
• Depersonalisation disorders - when you don’t feel like yourself anymore.

She said that these used to be associated with traumatic single or multiple events and involve the ‘splitting’ of the conscious mind to protect the individual from emotions that are too painful, but that it’s now known that complex trauma (lots of things which persistently happen over a period of time such as bullying or any kind of abuse which they perceive) can lead to the same kind of difficulties. She wanted to highlight this as something to be aware of, but said there is limited research regarding this amongst people with ASD or PDA.

Self-harm

Judy reported that although a lot has been written about self-harming amongst children with autism, it tends to focus more on those with significant learning and communication difficulties. She said that self-harm in this group is often used as a form of communication to express their frustration. About 35% of children with autism are reported to engage in behaviours such as hitting or biting themselves or head-banging. She said that there is some evidence to suggest that there may be a sensory element to some self-harming behaviour in children with autism and there may also be issues around differences in the way in which pain is processed and experienced by those on the spectrum.

She said that there may be other factors involved in the self-harming behaviour of adolescents and adults and that social media appears to have added to the apparent growth of self-harm amongst adolescents, with many sites sharing pictures of self-harming behaviour.

She said that self-harm is often negatively (and wrongly) viewed as being ‘attention seeking behaviour’. She stressed that it’s not done to get attention from other people, there is a reason behind it and professionals need to understand why it might be happening (often it’s a way of managing personal distress). She said “All behaviour is a form of communication”.

Some of the techniques suggested in DBT (Dialectical Behaviour Therapy) can be useful in helping manage the urge to self-harm.  Judy said that it teaches distress tolerance; ways of managing difficult and painful things without resulting to self-harm; how to resolve conflict and techniques to improve social skills. She explained that if you can’t get support from your local teams, you can buy DBT skills workbooks online and they have some useful exercises. She said even things like mindfulness can help. She advised that alternatives to self-harm such as an elastic band or an ice cube can help and said there are lots of ideas on line for help with this.

Judy said it’s important to keep the lines of communication open, particularly with adolescents, and that trying to help young people improve their ability to recognise and express their feelings is vital – getting that dialogue going about understanding feelings and emotions from an early age is very important so they know how to express when they are hurting or upset. Maintaining a calm approach when supporting the young person is helpful as well.

Eating Disorders

Judy said that this is a very under-researched area and it’s now known that a lot of children with autism have ARFID (Avoidant and Restrictive Food Intake Disorder). Some textures and tastes of certain foods are intolerable and evoke an exaggerated ‘disgust’ response. They will often only eat certain types or colours of food (often ‘beige’ food) and she said that most importantly, many of the children with PDA she sees do not appear to experience hunger in the same way other people do - they often don’t recognise that the feeling in their tummy is hunger. She said it could be for sensory reasons or because they are so used to feeling anxiety in their tummy all the time that they just don’t recognise the difference between that and hunger. Some may over eat to try and make that pain go away and some may not eat because they think it will make the pain better.

She warned that teenage girls with autism seem to be particularly at risk of developing eating disorders and said that some adult women with PDA have reported controlling their eating as a way of internalising their demand avoidance rather than reacting externally with a ‘meltdown’ once they reach their teenage years.

Personality & Conduct Disorders

Judy said that this is perhaps one of the most misunderstood parts of diagnosis, particularly for adults who present with a range of behaviours that they’ve internalised and have become part of them over the years. She said that a personality disorder isn’t a mental health issue as such, it’s a description of observed behaviours.

A diagnosis of a personality disorder should only be given to individuals over the age of 18. However, she has seen many young women as young as 12 or 13 diagnosed with ‘Emerging Borderline/Emotionally Unstable Personality Disorder’. She felt that at this age you haven’t even developed your personality and that it’s an awful label to give someone at 12 or 13, particularly if the majority of behaviours that they list could be, and often are, explained better by the young person having PDA.

She highlighted that this type of behaviour often develops in response to life events, and said that with the stress and trauma that young people with PDA experience, from trying to exist in a world that they don’t understand and that doesn’t understand them and from negotiating all the anxiety or the friendship issues, they can start to display the types of behaviours that might be thought of as resembling a personality disorder, particularly young women. However, if you look at the ‘why’ behind the behaviours it is quite different.

Another area of interest Judy highlighted is that young people with autism and PDA are often given a diagnosis of Oppositional Defiance Disorder (ODD), Conduct Disorder or even, (particularly for young adult males) Anti-Social Personality Disorder. She said they aren’t mental health issues as such, they are descriptions of observed behaviours and that many children with PDA are diagnosed with ODD because of their demand avoidance.  However, this is usually driven by their high levels of anxiety - she said it’s not about bad parenting or about not having boundaries or about attachment disorders, it’s about their PDA, but there is a huge lack of awareness about how these things present differently in different groups of children.

Mental health issues and Autism/PDA – are these just ‘part of the Autism’?

Judy said that she often hears that children who are experiencing mental health challenges or high levels of anxiety can’t be seen by local CAMHS teams because ‘it’s all part of the autism’. She said people with PDA may have lower thresholds for anxiety and are easily triggered into ‘fight, flight or freeze’ but that this shouldn’t be considered as just part of the autism because what kind of future does that give to young people if they aren’t going to get the appropriate support?

She said that early identification and intervention can help to identify the triggers and strategies can be put in place to reduce the level of day to day anxiety - this is where she hears about children and young people who are doing well, compared to stories like James shared at the beginning of her talk. Judy said it’s all about getting in there early and getting other people to understand.

Positive stories

Judy finished by shared some positive stories about PDA which adults have shared with her:
“The positive aspect of PDA for me is the strong sense of belonging I feel with other PDAers and the freedom it gives me to say no, not your way, I’m doing this life thing in the way I want to without feeling ashamed or guilty. I just can’t help it” - Dianna

“I realised I also have PDA after having my daughter assessed. Having confirmation of this was the final piece of the jigsaw puzzle I felt I’d been doing my whole life. I’ve used my diagnosis and my knowledge about PDA, both as an individual with PDA and as a parent of a child with PDA to move forward and complete my training as a psychotherapist with the goal of supporting other families“ - Anonymous

“I am self-diagnosed ASD and PDA. The realisation came when helping my sons through the process. I had the same ‘light-bulb’ moment as many when reading the list of PDA traits. I see the traits as double-sided like a coin with a good and a bad side e.g. contrariness and vision, stubbornness and determination. I’ve spent my whole life viewing myself as bad but can now flip the coin and see some good (half of the time), be kinder to myself and stick two fingers up to the world with pride rather than in anger and frustration!”. Sarah
“Relating to topics and discussion and banter in this group (an adult PDA support network) has given me an understanding of who I might be and how to move forward. You don’t need a diagnosis to know you have a difference” - Deedee

“I actually enjoy having PDA most of the time and I see it as a unique gift. It hasn’t always been that way of course - many struggles along the way but with support I made it through and learnt a lot about myself too along the way. When I was diagnosed at 12 I was given an outreach worker by social services. It was this lady’s job to take me to her house in the country once a week and teach me to open up and express myself but also to give my Mum a bit of a break. Her training was play therapy for abused children if I remember correctly, anyway, she taught me that I was good and kind and that I was OK. She also taught me to cook, bake sew and take pride in myself and my achievements. I’m still in contact on a personal level with her to this day - she’s very special to me. I don’t think I can say too much on just what the right support means, even if that’s just one day a week for five hours, it will make a difference. That lady gave me a special gift - self confidence when I needed it most. That’s what we all need really, the right support from people who like and understand us. I could always see right through people who were really doing their jobs and perhaps didn’t understand PDA that well and I still can. I tend not to react well to these people, I clam-up and refuse to engage, this is why I believe that not only is the right support vital but also the right people giving that support - I don’t think you can have success with one without the other. Life now isn’t all rainbows and kittens, in fact it’s hard but I’m happy. I have great support from my partner and a good network of friends too. I’m settled and I’m continually learning about myself and my PDA. I don’t have support from services so it’s my job to keep up and support myself, hence the constant learning” - Julia

“The thing that helped me most was finding out that I’m autistic and have PDA, that was the biggest help. However my best friend growing up was always there to guide me, in a fashion she helped me to navigate socially and was always there for me. A teacher in primary school was also the only adult who stood up for me against the bullying that was going on, although I didn’t know that I had been bullied until she pointed it out. I’m not sure if that was much help but her heart was in the right place” - Riko

“As an adult, finding out first about my autism and then my PDA has been life changing for me. The awareness has made sense of my life and enabled me to set myself achievable goals and fulfill my potential. Prior to knowing about PDA, I always believed I should be able to achieve the same as my peers e.g. be content as an employee and conform to social expectations. Now I understand my limits, that my demand avoidance and other issues impact on my ability to be an employee, I’m actually achieving loads. I was recently commissioned to design a logo for an African tribe and my illustrations will be included in the book being published worldwide next month” - Sally

“My Mother and her Mother, my Grandmother, both special-ed teachers in their day gave me always the space I needed to be myself and to make my decisions on my own. I was blessed with them having that confidence in me. If I needed a break from school, if I needed time to rest or go upstairs to dream and write poetry, I had it without question, ever. I’d never thought about this level of support until I realised other didn’t have that freedom. The self-directed outlook I was given enabled me to dedicate myself to a special interest at a very early age -I learned American Sign Language at 11 years old. Never realising after teaching at deaf schools  and attaining an MA in linguistics and research in the field, I would lose my own hearing - intuition is a gift I believe we are given and it can play out in so many unexpected ways. I’d never of been able to experience it without the complete freedom I was granted by these two lovely women, my Mum and Grandmother who were influenced by my Irish Great Grandmother, the first female to graduate WI Teacher’s College in the US. Freedom leads us to discern what is right for us as individuals” - Kiki-Marie