Autism, anxiety and the impact upon parents

This article is about Autism and anxiety. Research suggests that up to 85% of autistic individuals will suffer from anxiety. An autistic child 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 autistic children (and some autistic adults) 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.

But just how are parents supposed to manage a meltdown which goes on for hours?

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.

They are reporting EXACTLY the same behaviour and reactions in their children.

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 an autistic child 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 autistic adults, 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.