Thursday, 11 May 2017

Autism, anxiety and the impact upon parents

This article is about Autism and anxiety.  Research suggests that up to 85% of individuals with Autism will suffer from anxiety. A child with Autism is twice as likely as a neurotypical (non-autistic) child to experience anxiety.   A significant number will suffer from extreme anxiety – to the point that it affects not just their life but their family’s too.  Some children are too anxious to attend school or social events.  I am not talking here about reluctance to go to school, or a mild feeling of anxiety about a new challenge or situation, I am talking about complete meltdown and panic attacks at the thought of whatever is asked of them.  In our clinic we have even seen children who are so anxious that even the mention of school sends their anxiety levels off the scale.  This type of anxiety is debilitating.  We always say to people, visualise the worst situation you can possibly imagine being in; one where you feel under threat or completely overwhelmed.  Luckily, for most of us this only happens from time to time.  For children (and some adults) with Autism this can happen every day of their lives.  It is no wonder, therefore, that some will do anything (including hitting out or trashing the house) in order to escape from this feeling.

However, in this article I want to talk specifically about the impact of this anxiety upon parents who are often struggling to deal with the fallout.  On a daily basis, we see, and receive emails and telephone calls from parents who are quite literally broken.  Loving and caring parents who are experiencing what amounts to domestic abuse every day of their lives, parents who report symptoms of trauma (flashbacks, panic attacks and intrusive thoughts).  Very often these are mothers who have had to give up everything – career, friends, dreams of their own, in order to provide care and support (and quite often schooling) for their children.  There is no easily accessible support for these parents.  In desperation they visit their GP (sometimes repeatedly) and ask for a referral to anyone, anywhere, who might be able to help.

Instead of support though, they find that they are criticised and talked about in the classroom and by other mothers in the playground and, sadly, even some professionals.  ‘I don’t know what the problem is, he/she is fine at school’, ‘if he/she was my child, he/she wouldn’t behave like that’.  Then follows the speculation and discussion about what these poor parents must be doing (or not doing) to manage their child.  ‘He/she just needs boundaries’, ‘Try rewarding good behaviour and ignoring the bad behaviour’.  But just how are parents supposed to manage a meltdown which goes on for hours?  ‘Leave him to cry, he will soon get over it’.  What if he or she doesn’t just ‘get over it’ and what if crying becomes a full-blown panic attack where the child threatens to stab him or herself with a knife, or ties a ligature round his or her neck, or where the only way to escape from this ball of fury is to lock yourself (and your other children in the bathroom) while your child launches him or herself at the door armed with a knife?

It is no wonder that these parents arrive at our clinic quite literally shaking.  They are constantly on the alert at home, waiting for the next explosion.  Many describe it as ‘walking on a knife edge’ or ‘walking on eggshells’.  They try and put on a brave face, tell us how much they love their child and how they want to make sure he or she has the best possible future, but they are often exhausted, burned out and, not unsurprisingly, depressed.   Most are untreated and unsupported and simply left to get on with it as best they can.

It is important to note that these are not isolated incidents or confined to one particular group of parents.  We have seen parents from as far afield as the Middle East, all parts of Europe and the United States of America and what is so compelling is that their stories are unbelievably similar.  These are not parents who have read something on the internet, or seen a programme on the television.  They are reporting EXACTLY the same behaviour and reactions in their children.

In addition, they are stumbling about in the dark in terms of what to do for the best.  If your child is anxious and wants to spend every waking hour on the x-box or has a complete meltdown every morning about going to school, what should you do?  Accept that a child on the Autistic spectrum needs time to unwind and effectively re-charge their social battery, so you let them play for hours in a darkened room, alone apart from online ‘friends’? Accept that for some children, formal schooling is not working, so you home school?  What will happen to that child when they become a teenager or an adult?  Will they ever come out of their bedroom and engage in a ‘normal’ life?  What does ‘reducing demands’ mean?

To some extent, everyone, including the professionals, is working in the dark.  In years gone by, although there were undoubtedly people who would have been diagnosed with both Autism and PDA, there were no x-boxes or smartphones; children were not placed in a competitive, results-driven school environment and there was no TV or social media. There is also little research about what happens to adults on the spectrum, particularly those with PDA.  

Many of the parents of children we see at our clinic often say they recognise features observed in their children in themselves.  Some report that life got easier once they were in charge of their own destiny and not subject to endless demands from others.  Others simply said that they grew out of the extreme behaviour and found ways to manage their anxiety.  Others have not been so lucky and may be the absent parents, and those who have experienced some form of breakdown.  What is very clear is that teachers, mental health professionals and those involved in policy making, cannot simply continue to ignore this problem.  Parents cannot just be left with no support for themselves or their children.  Without appropriate diagnosis and intervention strategies, the problems experienced by these families can only get worse.  There is no point in trying to sweep this problem under the carpet, continue to blame parents or question their stories when they do seek help.  There are some children who simply cannot respond to a ‘Supernanny’ approach to discipline and child-rearing, and they, and their parents, need support and understanding now. 

For details of our services surrounding anxiety please head to our website at


  1. Dr Eaton. Just a few days ago I was told by a N&N paediatrician that PDA is a disputed disorder. This happened when I presented him with a confirmed diagnosis.
    He questioned the result as school had made it quite clear that my child is very happy at school.
    Thank you for writing this article. Perhaps it's just a matter of time. I just don't know the toll it will have on unsupported parents and of course siblings.

  2. Heading for your website now!
    I am that parent 💙

    1. good luck --keep asking keep insisting on help finally as in are case after 12 years approx somebody finally came to my house and noticed the sensory behaviour they looked at me as a weight lifted off my shoulders I am not ashamed to admit this has been a family health issue that has affected generations before un - talked about and un treated it was like someone had lifted the ---label that my bro and I had been given for years but gps and professionals had never given the help to --we suffer from a rare syndrome that makes noises over 10 times louder than the average person hears which is why we get anxious etc in crowded and noisy places X --KNOWING ABOUT AND ILLNESS IS HALF OF THE BATTLE TO DEALING WITH AND CURING IF THERE IS A CURE xx --LIFE IS GOOD WHEN YOU GET THE RIGHT SUPPORT AND ADVICE AND KNOW HOW TO DEAL WITH THE ILLNESS OR SYNDROME x :)

  3. The current waiting time for an Ados in Hertfordshire having seen a paediatrician is 19 months. And we all know how long it takes to get a paediatrician appointment. Once diagnosed you get one more paediatrician appointment and then you get discharged - there is no help or support whatsoever!

  4. Thank you for your brilliant articles. Sadly, no -one at my son's school listened when I said his anxiety levels were through the roof; I was looked upon, kindly, as that very same fretful , over-anxious mother, that is until I found my 10 year old son swinging with his school bag strap around his neck and hanging from his loft bed (both now removed). Fortunately, I got there in time. Other than trying to get him back into school to no avail (has not been for a year now) there is very little expert help out there. I have 2 kids with autism, PDA and other neuro-developmental challenges and no-one seems to know what to do. I now do what I feel is best for my children and not what society / professionals expect or demand. One attends a specialist school to provide respite and for the family and the other...well, we just take things a day at a time. True, they will not meet their academic potential but they both feel safe, loved and valued and we are no longer walking on a knife edge. Who knows what the future holds, I can only do the best I can for them today.