New Here! Hi :)

Hi Everyone

My 9 year old son was diagnosed with autism in January this year at the age of 8 after over 5 years of trying to get him help.  I was told as he was able to cope with a school day that he was fine even though he has a melt down most days after school as something small may have annoyed him (although its not small to him). 

He can not handle his emotions, excitement sees him bouncing off the walls, however so does his anxiety if we are leaving the house.  If we are out places he tells me his ears ring, his head hurts and there is water swishing in his tummy.  He finds it hard to interact socially and to join in games with other kids even if its his sisters, he doesn't understand that he doesn't need an invite. 

He runs on to traffic when anxious, if worked up even slightly all sense of danger goes out the window and he just runs. 

He goes from zero to 100 in seconds over things in the house and lashes out physically at himself or his sisters and lately me.

He tells me on a daily basis he wants to die and he doesn't know why he feels that way, but he hates living when everything just annoys him this is said both in anger and when calm.  When angry its gone from I want to die, to I want to kill myself, to I want to get hit with a car, to I am going to take a knife and stab myself in the heart......

He has issues with sound, the usual loud noises, crowded places, anything repetitive but also people singing esp his sisters.

He has told me that in class he finds himself zoning out and staring out the window, he loves school and this concerns him however his teacher thinks as he is getting the work finished and to a good standard then he must be fine but its causing him anxiety.

When he is calm, he can tell you all the great strategies he has heard of but he just isn't understanding when to use them

He had meetings with CAMHS just after his diagnosis but he wouldn't properly engage in them as his anxiety wouldn't allow, when ever they tried to speak to him about things he would look out the window and comment on what was happening outside so they eventually signed him off.  

There is so much more as you can imagine as parents yourself.  

Sorry for the long message, I suppose I am just looking for someone to point me in the right direction, I did have a couple of sessions on the phone with the Scottish Autism who told me to apply for DLA for him in order to try and buy him some things that may help him cope but he was turned down as apparently all the things he does are typical of a child of his age!!  

If there is anyone who can give me advice, point me in the direction of support, I don't actually know just tell me it gets easier to cope with?

Thanks Slight smile

  • Thank you so much for your reply, your explanations are amazing!  So he has ear defenders but is at that funny age where they are not cool and his older sister made a joke one day and called him elephant ears obviously not understanding the impact it would have on him but we are working on that.  He took them to his cousins party a few weeks ago and wore them the whole time so that was a big thing for him.   He is really interested in music, he likes certain singers it just seems that when his sisters sing or children in school etc do it that it drives him mad.  The learning more about sounds may be something he would find interesting and I have a dictaphone here so I will order the attachment thanks.

    The problem with the tent etc is he does share a room with his two sisters and there isn't a lot of space, we are in a private rental at the moment and cant afford to rent a bigger house this way so we are on the list for a council house but not exactly a priority.  I have been having a look at learning space for some ideas for sensory equipment, is there anywhere else you would suggest?

    His hearing is definitely hyper sensitive he was sitting this morning saying he could hear a ringing or buzzing sound and no one else could hear anything I am still unsure where that was coming from. Its just so hard trying to help him when there really is such a lack of support for his age.

    Thanks 

  • We really need a broader support network of Autistic individuals in society who are much older and can mentor these poor children stuck in this overbearing society. I feel for him!!

    It seems he needs ear defenders or noise cancelling headphones first of all. I've personally invested my hyper-sonic awareness into my job. If he's interested you could send him down a path toward learning about sound-technology. the physics of acoustics, geosonics (earth sounds), or music production. 

    Can you build a tent in his room with duvets to block out noise/light where he can escape to? Maybe even get him a Red Light torch for this tent. The Art of Escaping to a safe place is good for everyone to learn, really.

    It sounds like there are 2 main issues:

    1. Excitement is the same emotion as Anxiety/Dread. The exact same. A good example is found in the descriptions we hear when someone falls in love. They become terrorised by this excitement/anxiety. Other than wisdom and understanding chemistry, there is no known cure for falling in love. It's positively miserable and exhilarating all at once for many.  

    This incredibly heightened hyper-awareness of emotions is part of being Hyper-Sensory. Which is issue number 2.

    Our senses are tools for calculation. In the wild, they are Absolutely necessary. In a tribal setting, they save the tribe from the Lion no one else can hear approaching. These hyper calculations identify the faintest change in the night sky, the faintest scent of a wildfire hundreds of miles away... and so on. Senses aren't just taste and smell they also encompass 'feel', which is 'emotion'. 

    When any human is traumatised and in an emotional state, it's best to not Drive, not try to Fix a problem, not engage with an Argument, etc. So what we all know about emotion is when in a state of being Over-Emotional, one needs a bit of Me Time, to check out, reflect, have a nice cup of tea and a hot bath. 

    Here's where all this is tricky. 

    Most Neuro-typical individuals intake a type of 'Coding' or instruction from birth to Suppress and disengage properly from things which are overwhelming. A type of Dulling of the Senses. It's not bad or good - it just is and it's how most 'just get on with it'. I had extraordinary problems with language as a child. So unless you presented me with step-by-step very practical instructions, I wouldn't have been able to follow your rules or commands. I wouldn't have been able to express I was having problems either. From what I've read, Your son, most likely, will be able to tell the difference between harsh LEDs and incandescents. Will be able to hear the electrical wiring buzzing. Might even be able to have a physical reaction to fabrics made from plastics (polyester/nylon) in which the body cannot breath vs natural fibres: cotton, linen, pure wool, eucalyptus. Might be able to see a lack of geometrical formations or crazy making Chaos. It's Absolutely NIGHTmarish for most of us

    So I feel deeply for him. I get angry myself and then notice it and then have a little laugh but I'm older.

    His hyper-sensory awareness needs pointing out if you re-engage with some kind of help. Society is disabling. 

    My mind can go blank when asked a question or trying to explain something, it's best to give me a warning and substantial time to think through the mess of information hurling at me in this Library of my Brain. The Zoning out in class can also be a sign of a Good Imagination. I would encourage him to write down his daydreams, or help him and keep a notebook. He'll feel affirmed by your interest in collecting and cataloguing his thoughts. The more you affirm these, the more aware he'll become and then he'll be able to communicate when he got lost. Perhaps the teacher mentioned a word which inspired a world of ideas. I learned to discipline my skills of hyper-focus on what's being said and being in the moment through Improv (theatre) techniques coupled with Symbolic Logic. This site could be of use https://www.philosophy-foundation.org/philosophy-for-children

    As for death, we're all Tim Burton fans in my house. It takes the intensity out of it.

    But more importantly, his state of being, this hyper-aware and imaginative little human needs affirming messages that he has skills which are incredibly useful, make him the Chieftain while camping, for instance. Allow him to help you hear what he's hearing. In fact, for £15, this microphone you can attach to a Dictaphone (£30 Currys) to collect all kinds of electro-magnetic frequencies! https://jezrileyfrench.co.uk/coil-pick-ups.php 

    Just some ideas!