Tag Archives: Pathological Demand Avoidance

Attachment Disorder vs. Autism: An Overview and My Personal Experience

I am currently reading the book A Guide to Mental Health Issues in Girls and Young Women on the Autism Spectrum by Judy Eaton. I’m only halfway through the second chapter and it’s so incredibly validating. The book talks about misdiagnosis and co-occurring diagnosis of many psychiatric conditions in autistic girls and young women. I can relate to so much of it.

One concept that I found resonated particularly with me was “secondary misdiagnosis”. This refers to a situation where, while a woman was diagnosed as autistic initially, somewhere along the way, her diagnostic records “disappear” and she is rediagnosed as something else. Yes, that’s me! The book has a UK-based focus and I have been told quite often that, in the NHS, your records automatically move where you go. This is not the case here in the Netherlands: you have to transfer them yourself. Apparently though, in the UK, records can disappear too.

In the second chapter, the author discusses misdiagnosis of autistic girls as having an attachment disorder, disruptive behavior disorder or (emerging) personality disorder. Today, I will talk about attachment disorders.

In August of 2016, I demanded an independent second opinion on my autism diagnosis, which my psychologst had removed, for the first time. My psychologist told me she’d set things in motion, but would have to consult with the brain injury unit’s psychiatrist first. After all, my having sustained a brain injury shortly after birth was her primary reason for removing my autism diagnosis. As she returned, the weirdest diagnostic process I’ve ever seen, emerged: she started negotiating diagnoses with me. She said she was willing to diagnose brain injury-related personality change instead of the personality disorder she’d initially diagnosed me with, generalized anxiety disorder and an attachment disorder. I took time to think and eventualy ignored the attahment disorder thing, while reluctantly agreeing to the rest. We still used DSM-IV, after all, where you have to have endured “pathogenic care” to be diagnosed with attachment disorder.

In DSM-5 and the newest edition of the ICD, which was published in 2016, your early childhood still has to have been less than ideal, but the criteria leave room for milder forms of less than optimal care, such as your parents not having been very nurturing. I guess in my case, even with perfect parents (which I don’t have), my premature birth and three months in the hospital would suffice for the current “inadequate or inconsistent care” criterion for reactive attachment disorder.

However, the criteria for RAD say that the child cannot be diagnosed with it if they have an autism spectrum disorder. I understand this doesn’t mean autistic children and adults do not have attachment issues, since I for one do. However, when someone is diagnosable with autism, they cannot be diagnosed with RAD too. In other words, my psychologist ought to have ruled out autism – which she did a pretty poor job of doing – before trying to label me with RAD.

There are several features of attachment disorder that overlap with autism and particularly with pathological demand avoidance. For example, children with attacchment disorder as well as those with PDA can be superficially charming (in order to get what they want), indiscriminately affectionate with unfamiliar adults and inaffectionate with primary caregivers. Both are often defiant or manipulative. They also both can be controlling or bossy. Children with RAD are however more likely to be cruel to animals or other people or destructive towards property. They often show a preoccupation with such things as fire, blood, death or gore. Autistic children as well as those with RAD may avoid eye contact, but RAD children do make eye contact particularly when lying.

Judy Eaton outlines several distinguishing features between autism and attachment disorder. In the ICD-10, the following are mentioned:

  • Children who have a reactive attachment disorder will have the underlying ability to react and respond socially.

  • When abnormal social reciprocity is noted in children with reactive attachment disorder, it will tend to improve significantly when the child is placed in a more nurturing environment.

  • Children with reactive attachment disorder do not display the types of unusual communication seen in children with autism.

  • Children with reactive attachment disorder do not have the unusual cognitive profile often observed in children with autism.

  • Children with reactive attachment disorder do not display the types of restricted interests or repetitive behaviours seen in children with autism.

I definitely see how I have attachment issues. I am usually more open to strangers than to my own parents. Particularly as a teen, I’d also direct most of my aggression towards my mother. I could also be quite defiant. I however also definitely have communication oddities, repetitive behaviors and restricted interests and an unusual cognitive profile. I never “recovered”, though that could be blamed on the fact that I lived with my apparently inadequate parents till I was nineteen. Or it could be that I’m autistic.

Describing My Limitations

Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

Pathological Demand Avoidance (PDA) Awareness Day: My Life with Possible PDA Traits

Today, May 15, is pathological demand avoidance syndrome (PDA) awarness day. Pathological demand avoidance is a subtype of autism characterized by extreme anxiety, a need to resist everyday demands and a need to be in control. Core features include:

  • Passive early history in the first year, avoiding ordinary demands and missing milestones.

  • Continuing to avoid demands, panic attacks if demands are escalated.

  • Surface sociability, but apparent lack of sense of social identity.

  • Lability of mood and impulsivity.

  • Comfortable in role play and pretending

  • Language delay, seemingly the result of passivity.

  • Obsessive behavior.

  • Neurological signs similar to those seen in autism.

When I first wrote about PDA, I wasn’t so sure I believed in its existence. I recognized and still recognize many features, but the condition isn’t recognized in the Netherlands, so I can never be sure whether I have it. Also, I doubted whether my behavior may be a normal reaction to being in an institutional environment for too long. However, when I read stories from adults with PDA or parents of children with PDA, I recognize a lot. I am going to write about this now.

Pathological demand avoidnance is an autism spectrum disorder that shares traits with oppositional defiant disorder and reactive attachment disorder. However, children with PDA are not willfully naughty. The only rule I routinely broke was the one about not stealing candy. Then again, doesn’t every child do that?

I was a quiet child. However, i could show aggression seemingly out of nowhere. I acted out particularly when my parents or sister wouldn’t do as I said. For example, even as a teen I had no clue when it was not appropriate to demand my parents do something for me and I’d get upset if they refused.

I was an early talker and quite sociable as a young child. For example, I’d shout “Hi!” at everyone we met in the streets. This is expected in the tiny village my husband and I live in now, but it is definitely abnormal in Rotterdam, where I lived as a child. I was comfortable – perhaps too comfortable – in social interactions with strangers. As I grew older, this got worse. This is what got me thinking I might have attachment issues.

I was very comfortalbe in pretend play, but on my own terms. Autistic children don’t tend to engage in pretend play with other children, but I did. I however dominated the play situation. I was always the one who thought out the scernarios we were going to play. I also made the rules of what was “proper” pretend play. For instance, my sister could not say “My doll said ___”, because after all she was acting out her doll.

Most of my life, I’ve been able to hold down a conversation, again as long as it’d go on my own terms. I tend to dominate conversations and make them about topics I want to discuss. When this happened at my diagnostic assessment, my parents said I wanted to make conversation about me all the time. This isn’t necessarily the case. For instance, yesterday a Christian nurse and a patient with his own set of religious beliefs were discussing religion. It wasn’t about me at all and I didn’t make it about me, but as soon as i jumped in, I tried to control the conversation.

The core feature that got me thinking about PDA as applying to me, is however my resistance to ordinary demands. This may be an oppositional behavior too, but in PDA, the need to resist demands is not out of defiance. It seems to be more a core need stemming sometiems from anxiety and sometimes from sensory issues. For example, children and adults with PDA might refuse to brush their teeth when asked, but this is commonly out of sensory defensiveness. They may refuse to do household chores out of anxiety. Interestingly, they may do certain tasks that create anxiety in them when they’re asked to do them by others, when they are on their own. I can do household chores much more easily when I am the one in control or when I’m on my own than when it’s someone else demanding I do them.

Children and adults with PDA are often described as Jekyll and Hyde. They can act perfectly normal as long as they’re in control and their anxiety isn’t provoked. However, when people make demands of them or situations or people don’t follow their rules, they have rapid mood swings. I definitely relate to this and often wonder whether it’s my autism or a borderline personality disorder trait.

Fear of Demands

I admit it, I have a fear of demands. I originally wrote that I have a fear of independence. In fact, I thought for a while that I may have dependent personality disorder. People with DPD have a pathological need to be taken care of. They can’t make everyday decisions without a lot of counsel, need others to take full responsibility for the bigger decisions in their life, and may even stay in abusive relationships out of fear of losing someone to take care of them. They appear incredibly easy on therapists at first, agreeing with their every counsel. On a deper level though, this is just a way of maintaining the care relationship.

I still believe I have some traits of DPD, but this last bit is where I realized dependence may not be the core of things. I am not easy on a therapist at all. In fact, I remember being seen as very defiant when I was on a locked unit in 2007 and 2008.

I do have a fear of practical independence, I admit. Then again, it’s more a fear of other people taking contorl over what I can and can’t do practically. I’d love in fact to have full control over deciding what I can and can’t do independently. My fear is not of doing things independently myself, but of other people deciding I can do them independently.

This is where pathological demand avoidance enters the picture. PDA is a conditon along the autism spectrum in which people have a persistent anxiety of direct demands placed on them. They often appear defiant, but underneath this is a deep fear. It could be fear of failure in some ways, but it’s more.

There is an interesting aspect to my fear of doing things independently, and that’s that I can do them fine when no-one’s watching me. Also, when I take the initiative to do things independently I can do them much better than when others tell me to do them. I remember E-mailing around for a therapist to treat my dissociation in 2012 and I had no problem doing it. (I stll had anxiety about it, of course, but that’s more fear of the response.) I called the social consultant and client advocacy organization last week and was fine. On the other hand, when someone asks me to make a phone call or E-mal someone, it’s much harder for me. I also took the initiative to go live with my husband. Then, when my staff took away my control over it and demanded I show certain capabilities if I wanted to live with him, I backed away.

Unfortunately, the care system is built on the premise that psychiatric patients just need a little pushing to do things independently. Despite the rehabilitation and recovery models, which I applaud, people are only allowed to take control if they’ve shown their competence first. I cannot do this. It scares the crap out of me. I want recovery without having to prove myself. Hopefully, I’ll be able to accomplish this when I live with my husband.

Linking up with Finish the Sentence Friday. A little late, i know. The prompt sentence was: “One of the biggest fears that I’ve ever had to face…”.


Scarred. It can mean so many things. We can have scars on our bodies and on our souls. Sometimes, the scars on our bodies reflect the scars on our souls. Such is the case with self-harm scars.

I started self-harmign when I was very young. I don’t even remember when I started, but my maternal grandma asked when I was about ten wheter I still banged my head at night. I didn’t, but apparently I’d done this for a long time when I was younger. This is seen as a typically autistic way of self-harming.

When I was older, I started biting myself. My sister and I would sometimes bite each other when in a fihgt – usually I’d bite her more than she’d bite me. I also remember using hand-biting sometimes as a way to manipulate. Hand-biting is typically autistic too, although using it to manipulate is not. This could be related to my pathological demand avoidance traits.

I started cutting when I was sixteen. I vividly remember the first incident. It never got severe – most likely because I don’t have the tools to make severe cuts -, so my scars are relatively small. My biggest self-harm scar is on my leg from an incident last year.

The first time I was confronted with my self-harm scars, was when a staff member at the independence trainign home I lived in at the time, asked me about a slight scar on my hand. I didn’t want to talk about it, fearing that if I disclosed my self-harm, I’d be kicked out of the home.

Self-harm had multiple functions for me. The manipulative function is possibly still there subconsciously, but I also use self-harm to cope with strong emotions that are common in people with borderline personality disorder. Self-harm by the way wasn’t the main reason I was diagnosed with BPD.

As I said, self-harm has many causes. It can be used to express pain, as is often the case for me, but many people also hide their self-harm. If a person does it “for attention”, as it’s commonly called when someone self-harms to express emotions, that doesn’t mean they’re fake. Their (and my!) pain is real, only they have probably learned that the only way to express it is through self-injury. Ignoring people or suspending them from help, as happens in some therapy programs, is only going to be counterproductive and especially harmful if the person hasn’t learned more effective ways of expressing their pain. They need validation especially badly, because the very reason they started self-harming “for attention” is the lack of attention they and their pain got in the past.

Even those who self-harm “for attention” may feel self-conscious about their scars. I am fortunate not to have any too obvious self-harm scars, but I do know what it is like to be questioned about your scarred body. I, after all, have a scar on my belly at one end of the shunt I have because I had hydrocephalus as an infant. Children sometimes said I had a second belly button. When I was at one point worried that my shunt had malfunctioned, my parents also offhandly asked whether I could get the scar beautified if I was going to need to see someone about my shunt anyway. My husband, fortunately, has never made a problem out of my scar. I don’t even think he’s ever commented on it except when I asked him about it.

I am not particularly proud of my scarred self, but I don’t feel bad about it either. In November, I took part in a self-harm event which was being filmed for a documentary series. I don’t have time to go to the preview and most likely won’t watch the series as it airs either, so I won’t know whether I’m in it. If I am, I don’t mind. I don’t show off my scars, but I’m open to educate people about them and their cause.

Mama’s Losin’ It

Mami 2 Five


Handling Tantrums and Meltdowns in Children with Autistic Spectrum Disorders

Many children with autsitic spectrumd isorders, including pathological demand avoidance syndrome, have meltdowns. They can have different causes. A child may act out because they’re impulsive and find it hard to delay gratification. This is different from being spoiled, although the difference may be subtle. I still act out when I ask for help and am not told when I can get it. If someone is clear when they can offer me what I need (I don’t act out for not getting something I merely want, for clarity’s sake), I usually don’t have a meltdown.

On the other hand, as a child, even up to early adolescence, I used to have tantrums when my sister got candy or a gift and I didn’t. This is not normal for a neurotypical adolescent, but that doesn’t make it not a tantrum. An autistic child beyond the typical age for temper tantrums may not be able to take the other person’s perspective, so they may feel they’re being mistreated. This can be explained in a social story, but if a child still tantrums when they’re simply not getting their way, treating it as a regular temper tantrum is best.

Some children or adults act out because they’re frustrated and don’t knwo how to solve a problem. This is something inbetween a temper tantrum and a meltdown. I often used to be frustrated if my computer was having problems, but I would not use strategieis that would solve the problem, either socially acceptable (asking for help) or not (screaming for help). In one case when I was sixteen, I totaled my computer trying to make it work again, losing five months worth of important documents.

According to Adelle Jameson Tilton and Charlotte E. Thompson, authors of The Everything Parent’s Guide to Children with Autism, 2nd edition, a child can also have a meltdown because they’re denied something they want, but they lose total behavioral control and don’t “switch off” suddenly again if the wish is granted. Children in a meltdown do not take precautions to prevent themselves from being injured. They will not care if someone is watching or reacting, and the meltdown winds off gradually. I had meltdowns often when I was at the independence training home, throwing objects in my own apartment while no-one was there. I did need help cleaning up the mess, but usually I had calmed down and wasn’t asking for what I had originally wanted once the staff helped me clean up.

From my experience, I can tell that a meltdown can also occur when I am overloaded either cognitively, emotinally or sensorially. I remember a few weeks ago completely melting down even though I had gotten the attention I’d wanted already, because I couldn’t cope with overwhelming emotions and had failed at channeling my overload. When later asked why I had had this meltdown, I had no clue. This is in my experience a distinctive characteristic of a meltdown: meltdowns do not necessarily have an underlying reason.

Meltdowns can also happen after a small seizure, according to Jameson Tilton and Thompson. I read in my neuropsychology textbook that aggression during a seizure is very rare and usually stereotyped, but aggression after a seizure may be more common. If a child seems to be totally uninvolved in their environment for a few minutes before mtling down, this could be a sign of a silent seizure.

In children with pathological demand avoidance particularly, a meltdown may come on as a result of anxiety. Phil Christie and others in their book Understandign Pathological Demand Avoidance Syndrome in Children, make a rigid distinction between aggression with the purpose of avoiding demands and meltdowns out of anxiety, but in my experience this distinction isn’t always clear. After all, demand avoidance often stems from anxiety and/or overload. In situations where an autistic or PDA child is overloaded or panicking, it is important that adults reduce the demands placed on the child, use simple language and do not enforce social niceties such as eye contact.

It may help to evaluate your own behavior as the adult managing a child’s meltdown. You can ask yourself whether the demands you placed on the autistic or PDA child were reasonable, whether they were truly non-negotiable (so that you were willing to endure a meltdown for them), whether you reacted properly or may’ve overreacted, etc. Remember, a meltdown, unlike a temper tantrum, is not a power play, and as a parent, carer or teacher you shouldn’t make it about power.

If the person who had the meltdown is an older child or adult, and you have a trusting relationship with them, involve them too in the evaluation process. (Note: if you do not have a trusting relationship with them, this is something you’ll need to work on!) Evaluating should be done in a non-judgmental way, avoiding the blame game. For some children, social stories may be appropriate, while others can tell you what you need to do differently to help them prevent or minimize a meltdown. This is again not to say that you’re to blame for the meltdown, but many children and adults in a meltdown do need external support.

Pathological Demand Avoidance (PDA)

A few months ago, I became a member of some groups for pathological demand avoidance. Pathological demand avoidance (PDA) is a term coined by Elizabeth Newson from the UK for a set of symptoms that she claims are part of a distinct autism spectrum disorder. These symptoms include:

  • Obsessive resistance of everyday demands.
  • Appearing sociable on the surface but lacking deeper social understanding.
  • Excessive and sudden mood swings.
  • Language delay, possibly due to passiveness.
  • Obsessisve behavior, often focused on people rather than things.
  • Comfort (sometimes excessive) in role-play and pretending.

People with PDA are thought to have high anxiety and a need to be in control. This causes them to actively and/or passively resist demands placed on them by others.

I am not yet sure what I think of the existence of PDA. Is it yet another pathologization of annoying-but-normal behavior, or, worse yet, is it the new drapetomania? You know, the compulsive running-away of slaves? What I mean is, is it a healthy response to excessive authority? I was discussing something like this with my therapist last Thursday. I didn’t mention PDA – we’re treating my symptoms as part of borderline personality disorder -, but now that I think of it, I realize that the idea of PDA fits in neatly here. I have a seemingly compulsive need to resist expectations from others. Until I spoke about this to my therapist, I’ve always said this is a normal part of rebellion against the institutional system I’m in. Or is it? I resist attempts to give me responsibility for my own life, too, and earlier last week, realized I wasn’t sure I wanted to recover, out of fear of losing my support before I was ready.

Now I am not advocating labeling people with more diagnoses than they need. In my own case, it could well be that my problems are due to a combination of autistic overload, BPD-related identity confusion and having lived in situations where others determined my goals for much of my life. I am still unsure as to whether my therapist is not one of these authority figures, who wants independence only insofar as it isn’t defying her idea of who I am.

An important thing which Newson highlights in relation to PDA, is that ABA-style behavior modification does not work with PDA children (or presumabley adults). The therapeutic relationship is much more important than it is presumed to be in behavioral interventions. I like this, although I feel the therapeutic alliance is important for others with autism spectrum disorders too.

One thing I don’t like about Newson’s theory, is that she presumes PDA sufferers to be manipulative. Now I am not one to say that autistics can’t manipulate – they can and do -, but here comes the question again of where manipulativeness comes from: is it an innate PDA characteristic, or is it learned behavior in an attemt to manage a hard-to-cope-with environment? Newson assumes manipulation in PDA is not something the child chooses out of a will to be annoying, but out of a need for control and to avoid anxiety. Overload, of course, is often confused with anxiety, so in this sense I’m not too sure that I think.