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 https://help4psychology.co.uk/services.html 

17 comments:

  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.

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

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    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 :)

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  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!

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  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.

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    1. Your kids are so lucky to have you as their mother. Wishing you much luck and positive outcomes :)

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  5. Thank you so much for this article. I got to the point I was so stressed between my daughter's self destructive meltdowns that only manifested at home, her masking in school, and then the school's constant pressure that became threats of court and then safeguarding against me for FII that I literally shook every time the doorbell went or the phone rang. I used to run my own business and have an MA and Post Grad Diploma but I was reduced to a gibbering wreck in professionals meetings. Getting my daughter out of mainstream school was the best thing I ever did.

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    1. Sounds similar to my story, Storycycler: I do wonder about potential PTSD in parents/other family members as a result of trying to deal not only with the challenges our children present and the 24/7 mental angst we suffer, but also the punitive approach that 'professionals' adopt in dealing with us and our children.

      One day future generations will look back in horror at how abused we as parents have been by those supposed to be helping and supporting us and our kids.

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  6. Thank you for the article. I too am one of these parents told that he "needs boundaries and consequences". At this point all of our family of 5 is on some kind of anti-depressant or anxiety med. just to manage day to day life. We are lucky enough to have a school willing to at least try a little demand reduction and provide my son with an escape when he is overwhelmed. I hope more professionals will learn about this disorder, no matter what you call it IT EXISTS!

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  7. Thanks for this. I am an adult that presents with these symptoms but who has learned to cope, who also has two children diagnosed with ASD who also present with symptoms of PDA.

    Yesterday was school parent meetings for my Daughter wo is 5. We must have talked about her schoolwork for all of three minutes of what turned into a 40 minute interview. Her teacher outlined her concerns, described behaviours and outbursts. then proceeded to insist that something was amiss at home. That ASD didn't explain her behaviour. At this point I was taking notes and explained that I was trying to build a case for a PDA diagnosis. The teacher ignored that and continued to insinuate that poor parenting was the cause. At one point I outright called her out saying that if I was an outsider to my household who witnessed my daughters behaviour at school, that I would make the same assumptions but that's not the case. That I need support as the current way of managing her behaviour at school is causing more anxiety.

    My daughter is in P1. Has the odd meltdown at home but I can manage it. I've done it all before with her 14 year old brother. recently though she is refusing to go into school, causing dramatic scenes in school and lashing out. As far as I can see this coincides with a rise in the complexity of the work expected of her (she's learning to read) and the fear of not being able to regulate her emotions when playing with friends. She doesn't want to be a Bad girl. I feel like I'm screaming for what she needs at an empty abyss. No one will listen. Just like no one listened with my son. I'm more upset at the thought of having to argue and fight constantly at school for my children all over again, than upset at my daughters behaviour.

    I understand her behaviour. I understand my sons behaviour. I have the same anxieties and the same intense emotional reactions that overwhelm and eclipse all rational thought. I have the same panic attacks and I remember how much harder it was to cope at their ages. At 33 I've managed to find ways to get on with normal life. I can go to school plays and airports despite the powerful urge to run away crying the entire time. I can concede when I'm wrong and can debate an opposing viewpoint without getting upset or trying to manipulate or control the scenario. I can even have healthy romantic relationships and cope with the demands of my children in a healthy and encouraging way. I can recognise when I need and ask for help. I can do lots of things that were completely beyond me at their ages. I remember being confused and anxious all the time. Not knowing what was going to happen, what I was supposed to be doing, why everyone was cross at me and why I couldn't seem to do what the other kids could all do. I remember mimicking people and the isolation anyway.

    this has all got a bit ranty so i'm going to stop. It's just a relief to think someone might read and understand.

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    1. Alcorabbit, thank you so much for giving me hope for my own daughter (19-years-old, undx'd PDA). I am so sorry you have having to go through a repeat performance with your own daughter, after first time round with your son.

      As a parent* it is cripplingly exhausting, painfully upsetting, wholly confusing - only made ten times worse by authorities who have no idea what we deal with (and little interest) but who, instead, wish to castigate us for apparently abusing our children. (*And I can only begin to imagine how it must feel for our children.)

      Thank you for giving us your adult insight into your younger PDA-self. It is hugely helpful in my own understanding of my daughter.

      Wishing you much strength and luck xx

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  8. This is a wonderful article. I do feel for schools though as they mostly receive no funding or training to deal with PDA or other special needs children and yet are expected to be the 'experts' at understanding and teaching these children. There needs to be some government change to ensure that all school staff (and professionals) are up to date with understanding and caring for children with special/additional needs.

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  9. This is a super important article that I will be sharing. My only "dispute" is that I strongly believe that almost NO children benefit from Supernanny style parenting and that actually it can be pretty damaging to children in general. It is just really sad that our society deems that the appropriate way to treat developing human being that need love and support with boundaries that are enforced with compassion. I guess the difference is that in ASD/PDA children, the damage that is being done to the child with these techniques is exceptionally visible in most cases. It is such an important thing to be discussing. Thank you for your hard work.

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  10. https://www.bbc.co.uk/news/av/uk-47661167/instagram-cleaners-using-housework-as-therapy#

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  11. Thank you for understanding. It's a total nightmare as a parent but I am gradually seeing it's not just me. I hope other professionals start to recognise PDA too.

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