Pathological Demand Avoidance Syndrome (PDA)

Kay - posted on 01/05/2014 ( 2 moms have responded )

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Hi,

Does anyone have a teenage/adult son/daughter with PDA? My son is nineteen and since the age of two has had a diagnosis of Autism. A year ago he also got another label on him, PDA. Up until the age of sixteen/seventeen my son 'managed' to get through life ok (not perfect, but ok), but as he got older (towards adulthood life started to become more demanding and his anxiety heightened as a result. Several events happened around his eighteenth birthday that pushed him over the edge including being punched in an alleyway and he also lost his wallet in a strange town and didn't know how he was to get home. He did get home because he telephoned me, I rang the police and they made sure he got on a train without having to pay. After this he became a recluse, he used to lock himself away in one room in the house and would not come out. Most of the time he alienated himself from myself and his sister, but the rest of the time he was very controlling with us, it was as though in an attempt to have control over his own life, he had to control other people in his life. The arguments were bad and he would throw furniture and break it. I tried to get help for him from the doctors and social services for over nine months, but it was like hitting my head against a brick wall - no one was listening. Eventually I did get help and the doctor prescribed medication for him to help with his mood swings and his anger, but he would not take them. The police had to become involved as social services were hopeless, every time I asked for their help they told me to ring the police. My son was frequently arrested and either taken to the mental health hospital or the police cells. Eventually he was sectioned so that he would be forced to comply with treatment (his medication). I was obviously upset about this, but I thought well at least now he might get the help he needs. However, a few months later he got the diagnosis of PDA from the resident psychologist at the hospital (that was a year ago). He was on section in that hospital for a year on and off and has now gone to another (rehab) hospital. The problem is... being hospitalised is not the correct treatment for someone with PDA as it is a very robust, strict, regimental environment. People with PDA like a compromising approach and need to feel they are in control, otherwise they suffer great anxiety which often results in them having physical symptoms such as a racing heart beat and pains in the chest as my son frequently experiences. Every day when we speak on the telephone my son says he feels worse when in hospital as he feels like a prisoner and he has to follow rules and routines. Often people with autism find routines helpful and in fact feel reassured by routines, but not people with PDA, they need a different approach - a more compromising approach with key workers who they can get along well with, they do not respond well to routine or strict rules. I and my son have tried several times at mental health tribunals to get him off his section, but cannot. My son cannot understand why he is still in hospital on a section and neither can I as my son has said he would be willing to stay as a voluntary patient, but he would rather be in residential where he would have less restrictions. He says that being locked up in a mental health hospital is destroying his soul - he feels like he is a hopeless, person, well less than a person and he says that he feels he will be in hospital for the rest of his life unless he complies with the demands people put upon, but however hard he tries he cannot do it as he gets a panic attack - anxiety and physical pain in his chest. He does try really hard and some days he does comply well with demands/requests made of him, but he cannot do this all the time and then he feels very down because he cannot. Please is there anyone out there with a similar experience that can help/advise?

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Kelley - posted on 04/08/2014

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Hello....I am with a Facebook page called Pathological Demand Avoidance (PDA) Group....Here is a link....https://www.facebook.com/groups/pdasupport/. Everyone on here is so helpful....I have a son who is 8yrs and I believe he has PDA...On the page you will find lots and lots of information about the condition and how to deal with challenging behaviour...Lots and lots of people are in the same situation...It would be good for you to be able to talk and have some support....Hope the above information helps...Oh, here is a web page also about Pda....http://www.thepdaresource.com/. Kx

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[deleted account]

My daughter is 19. From the wry first day Shen a sister born has always had trouble sleeping. As a baby, she never slept one night in her crib...not bc I didn't try, but she wouldn't. The only way she would sleep was ina swing with white noise (hair dryer) going in the background. She refused a bottle and wa so lucky breastfeed and then went to solid foods. I thought her "problems" beyond sleep, started around 10 years old, with symptoms of anxiety, which prgroessed to angry outbursts and aggressive behavior. She was homeschooled, until 11th grade when I realized I could no longer homeschool her. She wouldn't do her work for me, but seemed very compliant for others, so I wasn't able to enroll her in community college to finish her high school education, ironically almost completeing an associates degree at the same time. We have seen many counselors, she has completed an intense 6 week outpatient CBT program, but we have never been given a definitive diagnosis. She has been on many different medications to help with anxiety, depression and sleep. They have helped a little with he depression, but very little with anxiety or sleep. She just started taking respersone for sleep 1 week ago and it has helped some. She says she sleeps better than if. It taking anything, which if she takes nothing, she doesn't sleep at all. I'm ammpushing her dr to prescribe a beta blocker for anxiety, but she is wanting to wait to see if increased sleep will help with anxiety first - as the beta blocker could cause worsening depression. Yesterday she went through the testing for autism, and actually while she was in testing is when I stumbled on PDA. The definition should have a picture of her beside it. I feel 100% this is her!!! I fee like whether we get a diagnosis or not, just knowing will help how I parent her.

[deleted account]

My daughter is 19. From the wry first day Shen a sister born has always had trouble sleeping. As a baby, she never slept one night in her crib...not bc I didn't try, but she wouldn't. The only way she would sleep was ina swing with white noise (hair dryer) going in the background. She refused a bottle and wa so lucky breastfeed and then went to solid foods. I thought her "problems" beyond sleep, started around 10 years old, with symptoms of anxiety, which prgroessed to angry outbursts and aggressive behavior. She was homeschooled, until 11th grade when I realized I could no longer homeschool her. She wouldn't do her work for me, but seemed very compliant for others, so I wasn't able to enroll her in community college to finish her high school education, ironically almost completeing an associates degree at the same time. We have seen many counselors, she has completed an intense 6 week outpatient CBT program, but we have never been given a definitive diagnosis. She has been on many different medications to help with anxiety, depression and sleep. They have helped a little with he depression, but very little with anxiety or sleep. She just started taking respersone for sleep 1 week ago and it has helped some. She says she sleeps better than if. It taking anything, which if she takes nothing, she doesn't sleep at all. I'm ammpushing her dr to prescribe a beta blocker for anxiety, but she is wanting to wait to see if increased sleep will help with anxiety first - as the beta blocker could cause worsening depression. Yesterday she went through the testing for autism, and actually while she was in testing is when I stumbled on PDA. The definition should have a picture of her beside it. I feel 100% this is her!!! I fee like whether we get a diagnosis or not, just knowing will help how I parent her.

[deleted account]

My daughter is 19. From the wry first day Shen a sister born has always had trouble sleeping. As a baby, she never slept one night in her crib...not bc I didn't try, but she wouldn't. The only way she would sleep was ina swing with white noise (hair dryer) going in the background. She refused a bottle and wa so lucky breastfeed and then went to solid foods. I thought her "problems" beyond sleep, started around 10 years old, with symptoms of anxiety, which prgroessed to angry outbursts and aggressive behavior. She was homeschooled, until 11th grade when I realized I could no longer homeschool her. She wouldn't do her work for me, but seemed very compliant for others, so I wasn't able to enroll her in community college to finish her high school education, ironically almost completeing an associates degree at the same time. We have seen many counselors, she has completed an intense 6 week outpatient CBT program, but we have never been given a definitive diagnosis. She has been on many different medications to help with anxiety, depression and sleep. They have helped a little with he depression, but very little with anxiety or sleep. She just started taking respersone for sleep 1 week ago and it has helped some. She says she sleeps better than if. It taking anything, which if she takes nothing, she doesn't sleep at all. I'm ammpushing her dr to prescribe a beta blocker for anxiety, but she is wanting to wait to see if increased sleep will help with anxiety first - as the beta blocker could cause worsening depression. Yesterday she went through the testing for autism, and actually while she was in testing is when I stumbled on PDA. The definition should have a picture of her beside it. I feel 100% this is her!!! I fee like whether we get a diagnosis or not, just knowing will help how I parent her.

[deleted account]

My daughter is 19. From the wry first day Shen a sister born has always had trouble sleeping. As a baby, she never slept one night in her crib...not bc I didn't try, but she wouldn't. The only way she would sleep was ina swing with white noise (hair dryer) going in the background. She refused a bottle and wa so lucky breastfeed and then went to solid foods. I thought her "problems" beyond sleep, started around 10 years old, with symptoms of anxiety, which prgroessed to angry outbursts and aggressive behavior. She was homeschooled, until 11th grade when I realized I could no longer homeschool her. She wouldn't do her work for me, but seemed very compliant for others, so I wasn't able to enroll her in community college to finish her high school education, ironically almost completeing an associates degree at the same time. We have seen many counselors, she has completed an intense 6 week outpatient CBT program, but we have never been given a definitive diagnosis. She has been on many different medications to help with anxiety, depression and sleep. They have helped a little with he depression, but very little with anxiety or sleep. She just started taking respersone for sleep 1 week ago and it has helped some. She says she sleeps better than if. It taking anything, which if she takes nothing, she doesn't sleep at all. I'm ammpushing her dr to prescribe a beta blocker for anxiety, but she is wanting to wait to see if increased sleep will help with anxiety first - as the beta blocker could cause worsening depression. Yesterday she went through the testing for autism, and actually while she was in testing is when I stumbled on PDA. The definition should have a picture of her beside it. I feel 100% this is her!!! I fee like whether we get a diagnosis or not, just knowing will help how I parent her.

[deleted account]

My daughter is 19. From the wry first day Shen a sister born has always had trouble sleeping. As a baby, she never slept one night in her crib...not bc I didn't try, but she wouldn't. The only way she would sleep was ina swing with white noise (hair dryer) going in the background. She refused a bottle and wa so lucky breastfeed and then went to solid foods. I thought her "problems" beyond sleep, started around 10 years old, with symptoms of anxiety, which prgroessed to angry outbursts and aggressive behavior. She was homeschooled, until 11th grade when I realized I could no longer homeschool her. She wouldn't do her work for me, but seemed very compliant for others, so I wasn't able to enroll her in community college to finish her high school education, ironically almost completeing an associates degree at the same time. We have seen many counselors, she has completed an intense 6 week outpatient CBT program, but we have never been given a definitive diagnosis. She has been on many different medications to help with anxiety, depression and sleep. They have helped a little with he depression, but very little with anxiety or sleep. She just started taking respersone for sleep 1 week ago and it has helped some. She says she sleeps better than if. It taking anything, which if she takes nothing, she doesn't sleep at all. I'm ammpushing her dr to prescribe a beta blocker for anxiety, but she is wanting to wait to see if increased sleep will help with anxiety first - as the beta blocker could cause worsening depression. Yesterday she went through the testing for autism, and actually while she was in testing is when I stumbled on PDA. The definition should have a picture of her beside it. I feel 100% this is her!!! I fee like whether we get a diagnosis or not, just knowing will help how I parent her.

Denise - posted on 04/13/2014

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I checked out the website, and I found the person doing the videos to be quite annoying actually. I dont know why, I would like to learn more as I feel that this may be a more proper diagnosis for my son. Do you have other ways for me to obtain information about this disorder?

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