Many individuals on the Autistic Spectrum including those with PDA appear to have real issues with going to sleep or staying asleep.  This can result in nightly bedtime battles, broken sleep for the child and the parents and in some cases sleep cycles may become completely upside down and out of sync with a 24 hour cycle.

So lets take a look at some of the reasons that may be causing these huge issues with sleep.  I am personally a big believer in treating the underlying cause for any behaviour rather than trying to simply deal with the behaviour head on which can become a battle of wills.

Potential reasons for lack of sleep or sleep disorders

  • Going to bed and going to sleep are both demands that the individual may seek to avoid.
  • Being asleep is also complete loss of control, while we sleep we have no control over our dreams or other people who may still be awake in the house.
  • Not being able to switch off, self-sooth and boredom while waiting for sleep to arrive.
  • Going to sleep is a transition, the finishing of one day and the beginning of another day.  The next day is the unknown and so it may be scary to make the transition that sleep will ultimately bring.
  • A child may be frightened to be alone upstairs.
  • Depression and low self esteem can also affect sleep.
  • The individual may not be producing enough natural melatonin in order to induce sleep.
  • The child may be suffering from a circadian sleep disorder

Therefore, there are many reasons why an individual may avoid sleep or simply may be unable to sleep.  Also what may have started off as demand avoidance could have then had a domino effect and affected the bodies natural melatonin levels.  So the triggers for sleep issues could be one or many.

Strategies to try

  • Try to make going to bed and going to sleep fun, turn it into a game and offer the individual choices E.G. would you like to go to bed at 7.00 or 8.00pm. In your mind you may be happy with a 9.00pm bed time.  But, offering between 7 – 8pm allows an extra hour, window of time, incase after choosing 8pm further avoidance ensues. In extreme circumstances and depending on family dynamics you may even decide for the family to all go to bed at the same time.
  • Avoid or strip back on any other potential demands that tend to occur around bedtime E.G. having a wash, wearing P.J’s.
  • Set the scene in the bedroom to make it a calming but non boring place to be.  This could include soft lights, the child’s favourite music, audio books, lava lamps, pleasent smells, favourite cuddly toys and so on.
  • Be patient, take you time and allow the individual sufficient time to cope with this transition.  Knowing what will be happening the next day may help, especially if the next days events are a choice for the individual rather than fixed.
  • Stay with your child while they fall asleep.  Sometimes playing word games can be helpful to induce sleep.  E.G. naming 6 girls names beginning with A and then B and work your way through the alphabet.
  • Some parents find that co sleeping with their child can prove to be the best option for them and results in a better nights sleep for all.
  • All you can do is to try to monitor if you child is depressed or suffering with low self esteem, which is something that affects many children with PDA.  Try to reassure them that it is ok to be different, that life will improve and that you love them, may help.  Having positive things to do each day and positive relationships with family members can help to improve self esteem.  I know how hard this is to achieve and still greatly struggle with my own daughter re depression and self esteem.  I have noticed that when she is feeling positive that this can improve her sleep for periods of time.
  • Either slow release melatonin for children who wake frequently in the night or fast release melatonin for those who struggle to get off to sleep in the first instance can be prescribed by a Doctor or Pediatrician.
  • Try to ensure that your child is exposed to sunlight or blue light in the day.  But reduce exposure to blue light at night because this can spell disaster for sleep. This may improve the production of natural melatonin once it begins to go dark.  This is wonderfully explained in this article
  • There are different factors that may cause circadian sleep disorders, please read the link for more information.  I am not currently aware of what you can do to help your child if it appears that this is what has developed for one reason or another. I will update this post upon further reading. However, this article may help if this has been caused by blue light and disrupted melatonin levels.
  • This is a useful and informative article describing factors that can affect sleep and how these may be rectified published in the Huffington Post

As a parent of a child with PDA I have experienced and done all of the above.  The many strategies have all worked at various times but sleep is still very much a huge problem for my daughter.  Her sleep pattern does not appear to fit in a 24 hour cycle and is described best by the term non 24 hour sleep wake disorder.

She desperately tries to fit in with a typical 24 hour cycle but she can only ever manage to do this for short periods and then it flips back again greatly disrupting her life.  Blue light from Ipads and phones may be a factor with my daughter, along with demand avoidance, which I will be seeking to address with the advice from this article.  Apparently you can purchase glasses which block out blue light.

Here is a classic example of how you can inadvertently help yourself when you are researching and writing in the hope to help others.

For more advice on PDA please view The PDA Society and The PDA Resource




About janesherwin

I am the parent of a child diagnosed with Pathological Demand Avoidance Syndrome. My hopes and aims are to raise awareness of this complex Autism Spectrum Condition presentation.
This entry was posted in 3. Strategies, Understanding, Resources, Discussion and More, Sleep, Uncategorized and tagged , , , , . Bookmark the permalink.

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