I’ve been wanting to write about this and still can’t really find the words.  I want ‘people’ to stop and think, really think, about what it might be like to see your child in emotional pain, extreme fear, anxiety, confusion and significant distress every day.  Literally every day.  Many times a day.  Often so severe that hysteria and / or dissociation is their only escape.

Sometimes they will scream and sob, stuff clothes into their mouths to reduce their own noise because even their own noise hurts their ears.  Sometimes they dissociate and completely become some-one or something else.  Their screams and cries when in this state are indescribable, Peter would dig holes in the carpet with his fingernails to try to escape, crying ‘die’ over and over.  Sometimes he would regress into a baby state so significantly he was unable to walk or talk.  Sometimes he was a dog and would ‘come round’ with a sore throat from growing.  Then he would be distressed all over again because he had no memory of the event….. psychiatrists were clear it was extreme anxiety.

Sometimes these children slightly loose themselves in a lighter state of separation (from reality), enough so that they can function, but at the same time are removed from he pain they’re in.  Peter would spend hours in a trance moving concrete slabs or furniture.

They may fall into strange dissociative sleeps any time day or night to escape their own mind which can’t avoid becoming anxious, or keep out the fears, or stop analysing every scenario so that they can predict every risk and know they can manage them…..

Over time their experiences add to the bank of fears and anxiety and reduce their ability to trust that the future will be OK.  Each day that an adult ‘gets it wrong’, shares presumptions that they ‘were fine at school’ or ignores barn door obvious signs of anxiety…  our child learns that it isn’t going to be OK.  Not tomorrow, not in the next class and not in the the school.  There are only so many chances you have with these children to secure their trust that the next teacher / school will be better.

Imagine watching them at 6…. 7….  and it keeps on coming.  Some adults in a professional role try to help, but they need all of the adults to help; and to work together.    Now they are 8….. 9…… and they start to realise the help won’t come.  Relative strangers with no medical training decide they are ‘fine’ over and over, year after year.  The demands on them increase month after month and their resilience diminishes to such an extent that coping is no longer possible.

Remember many children are diagnosed with ASD after admission to a Children’s Mental Health Unit.  How many missed opportunities are there for these children I wonder?

Witnessing this pain, relentlessly, is too hard to bear.  It’s inconceivable to most people and there is no doubt that you and their siblings become collateral damage.  

As time travels on you realise their almost their entire childhood to-date has been stolen from them and from you.  The day they realise this for themselves and cry and cry, because it is too late to get it back, is unimaginably difficult.

The grief builds and so do the traumatic experiences which, it seems, need to be processed before a decent recovery can start.  In a cruel twist this processing seems to happen during the times when they are (for them) feeling a bit OK.  So the times where they are more settled (out of school most likely) are when the memories and flash-backs creep back in.  They need to be processed, which in our case means that they need to be talked about.  Which means you to have to relive the trauma with them and listen to their painful memories again and again.

Quite often, ‘in the moment’ over the years I have been numb to the pain, calm nurturing and supportive in a practical sense.  So now when Peter works through his experiences I am feeling the feeling for the first time too… I can’t make up mind mind what is worse, hearing these, or hearing about additional experiences that I wasn’t even aware of.

As I hear about these over and over I find myself desperately praying that he can hang on for a bit longer .. so I don’t have to hear them… just hang on for a few more weeks Peter until you are in the residential school that I know will listen and help you to heal, I need you to trust again that it might be OK and I need you to process this trauma with some-one else.  I am broken too.

I really don’t think I can take any more pain.

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12 thoughts on “Pain

  1. I’ve had to watch my son go through this pain, he has PDA & Severe Anxiety, ASD it almost broke me and prolonged bouts have damaged him further. Most of the additional damage was done at school – Our journey has been a complete nightmare – No support – No help – My son is 13 now – It’s him & me against the world!


  2. Yes. And you know what makes it worse? When professionals don’t believe you because they mask it in school and then blame you for causing the anxiety you have been so desperately trying to get them help for. Then they make furtive social services referrals for child protection. It has strong shades of the babies killed by SIDS or maimed by so-called shaken baby syndrome which are both actually from vaccine injuries, the state harms and kills children and then puts their parents in prison for a ‘crime’ they didn’t commit.


      1. Exactly. And it’s not as if masking is not a known phenomenon. It’s written of on the NAS website and a host of other places. It’s basic autism awareness stuff, so you’d expect professionals to all have that understanding.


  3. Reblogged this on Planet Autism Blog and commented:
    Reblogging because the torture autistic children go through daily in the school system, the trauma that is unacknowledged by professionals (unless it’s to deflect the blame falsely onto the parent) is described so well here. A parent truly sees their child’s pain, all the while professionals dismiss it. Especially agree about the child losing trust in adults who don’t listen and the loss of their childhood. Tragic.


  4. This so resonates with me. We have had a similar battle with my son (now nearly 14) since he was seven. It took us five years to get a diagnosis of ASD and severe anxiety. Six schools later, nearly 2 years out of school, and now it would appear that his placement at the specialist ASD school where he’s been been at for the last term and half is breaking down. It is so hard to just carry on.


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