Saturday, 25 January 2014

PDA vs most common misdiagnosis

PDA is autism. However, because its not in the medical journal, despite having been recognised in the UK over 30 years ago, people who suffer from it are often misdiagnosed for conditions which are in the medical book and that are the closest fit that can be found. Common incorrect labels given to these people are Obsessional Defiance Disorder, ODD. Separation Disorder, SD and Attention Deficit Disorder ADD (sometimes with Hyperactivity in it, ADHD). I thought I would go through some of the main signs/symptoms of them and also describe how PDA differs.

Symptoms of ODD may include:
  • Throwing repeated temper tantrums
  • Excessively arguing with adults
  • Actively refusing to comply with requests and rules
  • Deliberately trying to annoy or upset others, or being easily annoyed by others
  • Blaming others for your mistakes
  • Having frequent outbursts of anger and resentment
  • Being spiteful and seeking revenge
  • Swearing or using obscene language
  • Saying mean and hateful things when upset
Many children with ODD are also moody, easily frustrated and have a low self-esteem. They also may use drugs and alcohol.

Symptoms of SD may include
  • An unrealistic and lasting worry that something bad will happen to the parent or carer if the child leaves.
  • An unrealistic and lasting worry that something bad will happen to the child if he or she leaves the carer.
  • Refusal to go to school in order to stay with the carer.
  • Refusal to go to sleep without the caregiver being nearby or to sleep away from home.
  • Fear of being alone.
  • Nightmares about being separated.
  • Complaints of physical symptoms, such as headaches and stomachaches, on school days.
  • Repeated temper tantrums or pleading.
Symptoms of ADD may include

A person with ADHD may have some or all of the following symptoms:
  • Difficulty paying attention to details and a tendency to make careless mistakes in school or other activities; producing work that is often messy and careless
  • Easily distracted by irrelevant stimuli and frequently interrupting ongoing tasks to attend to trivial noises or events that are usually ignored by others
  • Inability to sustain attention on tasks or activities
  • Difficulty finishing schoolwork or paperwork or performing tasks that require concentration
  • Frequent shifts from one uncompleted activity to another
  • Procrastination
  • Disorganised work habits
  • Forgetfulness in daily activities (for example, missing appointments, forgetting to bring lunch)
  • Failure to complete tasks such as homework or housework
  • Frequent shifts in conversation, not listening to others, not keeping one's mind on conversations, and not following details or rules of activities in social situations
Symptoms of PDA may include
  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people rather than things.
There are a lot of similarities. Especially between ODD and PDA.  But when you look further into it, there are a lot of differences too.
For example; PDA is Autism. ODD is not. PDA involves severe anxiety levels. ODD is not. PDA has links to the triad of impairments which are the true definition of autism. (Social and Emotional, flexibility of thought, language and communication) ODD does not meet the triad of impairments.
Individuals with ODD and Conduct disorder are also likely to suffer from co-morbid disorders such as ADHD, anxiety, depression and low self-esteem.

Duck fits most of the criteria for ODD. She does not fit the criteria for SD or ADHD. However, she also has some strong links to the triad of impairments and she has already been diagnosed as having severe, generalised anxiety issues, (which have not responded to treatment).
So, using the triad of impairments, let me describe Duck;

Social and Emotional;
Autistic children have difficulties with the following;
Friendships, unstructured parts of the day and working co-operatively.

Duck constantly has friendship issues, At break times, she will revert to role play games, and take charge. She will storm off or throw a tantrum if she loses the control and therefore does not work co-operatively. This has also been seen in class recently when she refused to work with a group of boys because they were not doing things the way she wanted it.

Flexibility of thought
Autistic children have difficulties with the following;
Changes to routine, Empathy and generalisation.

Duck does not like change. If she is pre warned, with sufficient notice, then it is possible to change a routine. However, sudden change she finds extremely difficult. She has little empathy and will often complain about a crying child when she sees one out and about and tell me to make it 'shut up' . She always needs specific detail. What time, how long etc. And if we are a minute past the time I gave, she becomes very anxious. Even if I clearly say 'Around 2pm'.


Language and communication.
Autistic children have difficulties with the following;
Difficulty in processing and retaining verbal information.
Difficulty understanding; jokes and sarcasm, social use of language, literal translation, body language, facial expressions and gesture.

Duck does not retain verbal information well. She will repeat questions over and over to clarify, she will check plans many times until she is happy with her own understanding. This means, she will often ask the same question in several different ways to ensure she gets the same answer.
Duck sometimes understands jokes, but mostly will mimic the social environment and laugh. However, if you ask her explanation of the joke, she will reply 'I don't know'. PDA children learn social mimicry. That's one of the main reasons they are not diagnosed, they 'appear social but lack depth'. Duck does not comprehend sarcasm and will take on the literal meaning of any comment made. Duck will mimic facial expressions and can pull amazing faces, however, she cannot 'read' body language and will not be able to work out if someone is upset or angry. Often she does not understand why they are upset or angry either.

PDA children are very complicated. They appear social, they mimic behaviours, they are often intelligent and talented. They can perform well at school, although they often have a limit. They can blend in with the crowd and appear to be conforming. They often go under the radar at school and the school don't believe there is anything wrong with them. They are unique. Duck has been under the radar for 5 years at school. Whilst they did notice an odd social issue, nothing else was picked up on, despite me saying she was autistic over and over. Because she had been assessed and not met the target for autism (again common in PDA because they appear social), the school believed there were difficulties, but they had no idea how daily life was affecting Duck. Until this term. This term she has reached her limit. She is trying to refuse school, they see it every morning. She is starting to be defiant in class (one or two small incidents) and she is becoming increasingly frustrated with life in general. Basically, she is not coping. She appears to have reached her limits and is beginning to show it to other people. This term Duck has given the school reason for concern. This term we have seen movement in support and we are on way to a diagnosis. I know Duck fits ODD. I also know from working with children that Duck also does not fit the profile for ODD when you look further into her. She fits the profile for PDA.

Duck IS autistic. Its time it was recognised. There is a saying 'The longer a child with autism goes without diagnosis, the harder they are to reach'. Duck is almost 10. She has gone long enough without diagnosis. She needs reaching.

As things stand, Duck wont be reached. PDA 'doesn't exist' in the medical books. ODD is the most common diagnosis for a PDA child, because they generally tick all the boxes. ODD is not autism, and nor does it get a child the support they so desperately need.
So far I have managed to get our local Cahms to agree PDA is an 'emerging' condition, which is a huge step from the total denial I had a few weeks before. However, PDA children are good at pretending, unlike most autistic children. When it comes to assessment, Duck has the ability to hide her difficulties. Its going to take a 'real' specialist to assess her and see what I see.

All I can do now is wait, then point out the differences between Duck and ODD/SD/ADHD. I know they are there, I can see them. So can most who really know Duck.

Join us, help us get hundreds of children, teenagers and adults diagnosed correctly. The treatment is different, the support is different. PDA need autistic help. ODD don't.

Sign the petition to get PDA correctly recognised. Lets change this and reach the autistic children who are going far too long with no diagnosis.
http://epetitions.direct.gov.uk/petitions/57807








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