It’s Like a Rubik Cube

rubik

“It’s like a Rubik Cube” he said. Mmm I thought another analogy I’m going to have to get my head around. Stig loves doing this, when we talk about behaviour, emotions or the situations he finds himself in, he will liken it to something, “a city”, “a game of football” maybe “a war” and today “a Rubik Cube”. I’m trying to explain to him the differences between him and his brother after another stressful breakfast. Tink is currently an antagonist, constantly looking to provoke and extract a reaction. He goes for the big gestures he wants frustration, annoyance even anger. I’m trying to instil in Stig the art of ignoring, walking away and taking the higher ground, but as a nine year old with an extremely annoying little brother it’s really not that easy. Yet again, this morning, Tink has managed to exacerbate his brother into a stroppy, teeth gritting and fists slamming mood.

So Tink has been diagnosed on the Autistic Spectrum. It’s over six months now and I’ve still not picked up a single book, read a solitary article or spoken to any knowing professionals about this. CAMHS at the time were happy to diagnose him but not so willing to offer continuing support. They have however recently invited us on a half day course in May.  Why is it I’ve chosen to not read when normally my default reaction is “ I don’t know about this, I need a book”.  Well I’ve come to the conclusion I’m still in denial. Denial is the great big space I’ve gone to because I don’t really believe what I’ve been told. Here is why.

In order to assess my son I first had to deliver him to an unknown building and two unknown people and was asked to leave him for over an hour. The reports on how he behaved in this time read like a horror story. Really upsetting to hear of his strange little voices, his inability to stay focused on a conversation, his disregard for social etiquette, all apparently indicators for ASD. Yet how else would you expect a seven year old child struggling to form meaningful attachments to his family, even after five years, to behave? All the behaviour that was recorded we have seen at some point or other, we recognised that, just not in the intense exaggerated fashion the assessors did. Just maybe these behaviours are also those of a terrified child, the behaviour indicating that this situation was indeed extremely stressful for him. Similar behaviour, although not quite as extreme can also be seen in school and yes at home sometimes but certainly not all the time.

Stage two of the assessment dealt more with problem solving and puzzles and on this occasion I sat in with him. The examiner talked him through a number of activities which he mostly attempted, getting some wrong but also doing well at others. One exercise he had to undertake with a pencil aiming to assess his processing speed, looking at a sequence and recording what came next. My sons have both struggled with handwriting, it’s common in neglected children, and I watched uneasily as he attempted to mark the paper as best he could. He was also asked to perform a number of word games, word association and choose descriptive words for items. He did brilliantly at this, words and reading are his thing, his understanding of language will take him far.  The results for this section showed that he appears to have a gap in his understanding of abstract logic, odd I know. He struggles to repeat a pattern that is formed with shapes, if it is an item he recognises, like a tree, a car he shows more understanding but abstract not. The other thing identified was that he has poor processing speed based on the mark making test, but as I’ve said he’s not good with a pencil.

There was also a school observation in which his sometimes uncomfortable behaviour with his peers was noted, but that is it, that is how it has been decided that Tink is on the Autistic Spectrum. I have been knowingly informed by another member of CAHMS that those undertaking this test really do know what they’re talking about and I should listen. I don’t doubt for one minute that as far as ASD is concerned there is expertise but just how much is understood about the incredible similarities that a child with attachment issues presents when compared with a child with ASD? I don’t even know but my gut feeling is not to jump fully on this bandwagon.

What I do know is that for those on the autistic spectrum, as with our adoptive children, there is no one fits all scenario. Tink however seems to fit the scenario little or at least display attributes that really could be as much attachment as ASD. He has none of the sensory issues that ASD can often be associated with, no fuss about food textures, touching or a problem with light. He finds shouting distressing but so do lots of adopted children, he has no problems with load music, computer games or the television blaring out. He is exceptionally untidy, no sense of order at all,  he does struggle to tidy his bedroom, but then I struggle with the enormity of it when I relent and do it, because he gets it so very messy, chaotic even.

He is awkward and rude in company , turning his back to people and refusing to speak but I know this is because he finds it difficult, not because he doesn’t know how to behave but he’s embarrassed, not sure of himself and lacking in confidence. He can also at times be engaging with people, often singled out as a bit of a character or a charmer when the mood takes him. At home he can be loving, attentive and full of chatter, intelligent chatter that follows a conversation, offering opinions and he loves a joke, telling jokes and being told them, he’ll always laugh and get it. He can be inappropriate with his responses, a bit too cheeky maybe but he can also be very considerate. The other day when talking about how many grey hairs I had showing it was Tink that said “really mummy there are not many and you are still beautiful” where as Stig gasped in horror as I tilted my head for them to see.

My motherly instinct is that what we are currently seeing in Tink is the finding of his voice, for years he has sat back kept it all in, nursed his own emotions and not been willing to share. In recent times he’s been finding the strength to tell us how he’s feeling and started to let it all out, now it’s all tumbling out  and actually he doesn’t have the emotional intelligence to understand what it all means and how to express it.Most children were discovering the voice of their feels at three or four he’s now eight. So the language is provocation, agitation and angst as the hurt and neglect pulses uneasily under his skin.

I really don’t want to dismiss this diagnosis, that would be foolish and in fact in school it has helped as the language of ASD is better understood by the educators than that of trauma and attachment. Strategies are in place to better support Tink and greater understanding is shown to his behaviour. But I shall remain on the fence and see how things unfold before I dive into a sea of ASD literature.

I will watch as my boy starts to discover his world, who he is and what he has to say, climbing his mountain one step at a time. Just this week he’s discovered the real enjoyment of drawing for the first time, previously lacking in the belief of his ability and not trusting his imagination to provide the ideas, suddenly a spark has been ignited in his creative being and he’s off. Drawing a world full of characters that have leaped from his mind to the page, he sits in a little design bubble drawing and listen to the music from Hairspray.

As for that Rubik cube, Stig said. “Well it’s like on my Rubik Cube, I’ve got some of my sides matching and it’s starting to be solved, but Tink’s Rubik Cube is more messed up.” I really couldn’t have said it better myself, but I’m confident that we are moving towards matching sides soon.

14 Comments

  1. Victoria Welton March 13, 2013 / 11:54 pm

    You really are a fantastic Mum Sarah, and I love Stig’s analogy :) x

    • thepuffindiaries March 14, 2013 / 9:05 am

      Thank Victoria, hard to know sometimes which bits to listen too. x

  2. Older Mum (@Older_Mum) March 14, 2013 / 4:50 pm

    Excellent post. And a part of me is raising a brow at the diagnosis – I think what is going on is far more complex, and I think and congratulate your wonderful mothering – that this is also very much about finding his voice and feeling safe in the world after years of neglect. Thank goodness Stig – that analogy was just amazing BTW – and Tink are with you! X.

    • thepuffindiaries March 14, 2013 / 5:58 pm

      I’m no expert on these things but I’m becoming increasingly aware that I am the expert on my children. I’m not dismissing it all but I’m certainly not buying it either. Thanks for your lovely and very supportive comment. x

  3. thefamilyof5 March 14, 2013 / 8:37 pm

    Big girl was dx with ASD and attachment difficulties in September. I found the asd dx helped people understand her more, wether whatever she is doing is asd or attachment, that label seems to have helped people support her rather than judge her, i even found it helped me to make sense of some things and I found I had more compassion rather than irritation from that point!
    I love his anology of a Rubiix cube, clever boy!

    • thepuffindiaries March 14, 2013 / 8:47 pm

      I must admit I’m using it to our advantage at times but I’m wary of removing the expectation for development which an ASD may determine. It has been recognised by CAMHS and school that other factors are involved so on that front I’m happy. Thanks for commenting and glad to hear that it’s helped for you.

  4. Stix March 14, 2013 / 8:44 pm

    Spot on analogy Stig. He’s a clever one..that boy!
    I think you’re right to be wary…I was the opposite and when Mini was younger I asked for observations as I suspected he was on the Autistic Spectrum. A couple of years later, I found a great document that side by side detailed a sign of Autism, and a very similar attachment difficulty sign…they are indeed similar, but there are subtle differences.
    Go to the course, use the diagnosis if it gets you help in school, but do listen to that mother’s instinct of yours x

  5. bavariansojourn March 15, 2013 / 9:28 am

    The rubics cube analogy is just perfect! You have two very wise boys you know… And don’t ever doubt yourself, you are the expert – you are their Mother…

    • thepuffindiaries March 15, 2013 / 9:33 am

      I know he’s clever beyond his years with his emotions. Thank you for your supportive comment. x

  6. Sonya cisco March 19, 2013 / 7:50 am

    It’s such a complex area, I am fairly certain my middle boy, who is 9 now, is on the spectrum, but he hasn’t been ‘tested’ since he was 3, his school suspect aspergers, as do I. I wrote about him a while back, and how I choose to think of him as quirky, and that while his behaviour isn’t causing him or others problems I have chosen not to label him. However there are times, like when he behaves so peculiarly at hairdresser etc, that it would be handy! Your boys both sound wonderful, and we really do know our children the best, you are doing a wonderful job! X

    • thepuffindiaries March 19, 2013 / 10:41 am

      Thank you Sonya, I think quirky is a good way to describe my son too and I like it because it suggests uniqueness and individuality. Attaching a label to a child seems to be a double edged sword. On one side greater support can be given to help the child but on the other people have preconceived ideas of labels that are not always positive. I will look back at your post and thanks for your kind words. x

  7. Izzwizz February 24, 2014 / 11:55 pm

    Just want to add my admiration to that of everyone else’s for Stig’s analogy. It’s remarkable.
    It sounds to me as if you approached this diagnosis in the best way possible … You listened to it, and took the bits which could be useful for Tink, and parked the rest… Because it’s still early days.
    My son J had labels attached to him early on which turned out to be unhelpful and inaccurate and contributed to very significant delays in his being adopted. So I think its good to be a bit of a sceptic myself.

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