glossary of a diagnosis

It seems a lifetime ago that we began the long search for understanding – the pathways to a diagnosis. Ultimately as parents we long to deeply bond with and get to know our children, these wonderful, tiny, unique gifts. We long to understand so we can share life together, and provide well for their needs and watch them thrive and grow. Looking for a diagnosis for us was not a desire for a label, or to find the right ‘box’ – it was to understand and from that understanding to love the best we can, support the best we can, and protect the best we can.

There have been so many professions and medical terms that we have encountered in the process, it has been a little bewildering at times and definitely overwhelming sometimes. But I have definitely learnt a lot: here’s a taste of some of the phrases we have had to find out about!

  • ADOS – a set of observational assessments used to diagnose autism.
  • Autism – Also known as Autism Spectrum Condition, and Autism Spectrum Disorder. A condition with distinct areas of difference (neuro-divergence) from the norm (neuro-typical) in terms of thinking and imagination, social interaction and communication – in our house we refer to these differences as superpowers!

Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.

These differences, along with differences in diagnostic approach, have resulted in a variety of terms being used to diagnose autistic people. Terms that have been used include autism, autism spectrum disorder (ASD), autism spectrum condition (ASC), atypical autism, classic autism, Kanner autism, pervasive developmental disorder (PDD), high-functioning autism (HFA), Asperger syndrome and pathological demand avoidance (PDA). (from the national autistic society)

  • Alexithymia – inability to identify and describe your own emotions.
  • Dermatillomania – compulsive picking of skin.
  • DISCO – a lengthy questionnaire based diagnostic assessment.
  • Echolalia – a very precise copying of a word or phrase, from TV or a person. Sometimes for self-calming like stimming, sometimes for communication.
  • EHCP – Education & Health Care Plan, fairly new in the UK it’s aim is to be a joined up thinking, legal document of a child’s needs and support needed as they go through the education system.
  • Hypermobility – Hypermobile joints, but also for some hypermobile or stretchy skin, and joining tissues throughout the body with huge affects on health. Ehlers Danlos has found this is also a spectrum condition with sub-diagnostic terms. (Find out more about EDS here.)

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  • IEP – an Independent Education Plan, a system of setting goals and reviewing in a positive cycle with school.
  • Lanugo – fine downy hair growing on back or face when the body is in starvation mode. Not a term I want to have found out about really.
  • Meltdown – different from temper tantrums, connected to sensory information overload. I wrote more about it here.
  • One sided verbosity – not taking turns in conversation; rather talking at someone, using a lot of words.
  • …RefusalSchool Refusal; absolute paralysing panic about going to and being at school resulting in extreme avoidant behaviour (hiding, throwing, kicking, biting, running away). It can mean it is impossible to keep going to school for some. Food Refusal; panic about eating resulting in extreme avoidant behaviour. Can be connected to sensory hypersensitivity, neophobia (fear of new – normal phase in early childhood), and cognitive rigidity (connected to context, utensils, brand, look of the food). It means a restricted diet, and heaps of anxiety around food.
  • Selective mutism – I have written about this here; an inability to speak due to panic.
  • SEND – Special Educational Needs and Disabilities – a term used in schools where there will be a list of students identified as having SEND, and a SENCO (Special Educational Needs Coordinator) whose job is to coordinate support.
  • Sensory Processing – talking about the way our brain & body works to process the information it receives through the senses (taste, smell, sight, sounds, touch, knowing where our body is, understanding what the inside of our body is needing/doing) Just as each of us experiences pain differently, all the senses can be experienced differently. Sometimes someone can be hypersensitive to a particular type of sensory information, and/or hypo sensitive (not able to take in enough sensory feedback in a particular area).

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  • Sleep Hygiene – a term used to mean the good habits and routines that help our bodies get a good and easy night’s sleep. You know, no screens near to bedtime, ‘bath, story, bed’, have a calming bedroom, lights out etc. You can do courses in this too – yes been there done that!
  • Slow processing – talking about the speed your brain can take in information (either visual information, or audible) and respond to it.
  • Stimming – a repetitive movement, sound or word used to self regulate.
  • Webster-Stratton – a parenting philosophy and method. It’s not specific to autism, and you’d recognize it by it’s ‘time out’ method (1 min for every year old, no communication, stay on the step…). I completed basic and advanced levels at our local children’s center. But found the strategies didn’t work with us. I also found I wanted to adapt the time out process to include a sorry & forgiven stage. The part that was useful was the chance to see that we were getting lots of good parenting done – and that B’s reactions and behaviours were not typical.
  • 1,2,3 Magic – another parenting course, this time written by someone with autism in mind. Confusingly it uses the phrase ‘time out’ in a completely different way – a time to calm down and regulate. All about picking your battles, ‘contracts’, simple strategies, and tailoring rewards & consequences to your child.

I’m sure there are loads more that haven’t come to mind right now. And I’m certain there are heaps more still to encounter.

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peace, not necessarily peacefulness

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Goodness it’s been quite a half term in the Porter house! A new school for T, college for the first time for B, and the beginning of the exam years for A. Plus new chaplaincy work for Andrew alongside church, and all the usual responsibilities. Of course, for me this has brought yet more steep learning curves and the challenges of stepping up to the new ways support from me is needed for everyone. Trying to understand and navigate the Further Ed support systems, beginning to build partnership and communication with new tutors and teachers. Reading and re-reading policies and guidelines, law and recommendations to try and work out what adjustments and support it is reasonable to ask for, what I need to find independently and what simply isn’t out there that I’m going to need to creatively put in place myself. One of my friends reminds me that I once said to her that chaos is chaos – no matter how much more you put into the mix, but my goodness it feels as if we have chaos full to bursting at the moment!

Yesterday the secondary school where I’m on the chaplaincy team had a service all about peace. At the end there was a time of reflection with beautiful music being played. In between the boys behind me asking me what different questions on the reflection sheet meant (which I loved chatting about) I sat and read, and re-read ‘my peace I give to you… do not be troubled, do not be upset’. And I sat there and heard Jesus say these words into all of the above and more, and I became aware of my aching painful permanently stressed out shoulders and neck, and I pondered this gift of peace. Given into the midst of the storms of life.

“I’m telling you these things while I’m still living with you. The Friend, the Holy Spirit whom the Father will send at my request, will make everything plain to you. He will remind you of all the things I have told you. I’m leaving you well and whole. That’s my parting gift to you. Peace. I don’t leave you the way you’re used to being left—feeling abandoned, bereft. So don’t be upset. Don’t be distraught.” (John 14:27, MSG)

We rarely have ‘peaceful’ times in our family life together. And when we do it’s short lived. We work hard to find ‘peacefulness’ and rest for each of us – we each find it in different ways and places. A good book, quiet, dancing to loud music, gardening, walking, animals, being alone, being with others, baking, drawing and painting, playing, minecraft, SIMS… But it’s elusive and fleeting, the ‘peace’ we can find for ourselves in those ways. It’s needed respite but it doesn’t come close to the deep seated, welling up, strong, protecting all around me kind of peace that I sense Jesus is talking about.

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I think I began learning what this Jesus peace might be like when I was only a child. Words from a song we played on a record over and over, and sang along to have stayed with me through the years and pop into my mind to remind me of the truth I grabbed hold of as a child listening to ‘the music machine’: ‘peace is holding Jesus’ hand’. It is active, holding onto him, trusting in who he is. It is a gift, he stands next to me with his hand stretching out to be held onto, giving himself. He is our peace. We are accepted, loved, understood. We are safe and held through every storm of life. We are not defined and restricted by the systems we have to navigate but defined by and in this belonging with Jesus. Our well being and purposefulness rests in our belonging with him.

My belonging in him can give me the courage I need. I can lean into his love for me when worries yet again try to overwhelm me. When everything feels as if I am wading through treacle I can be sure I am with the one who can speak to howling wind and dangerous waves – and put them in their place! The troubles, worries, concerns, mountains we face do not disappear but we are not bereft or alone. We are ‘holding Jesus’ hand’.

 ‘I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.’ (John 16:33 NIV)

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selective (not selected) mutism

It’s a very unhelpful name, selective mutism I think. If we were in the middle of a game of word association it might be followed by ‘choice’, ‘choose’, ‘select’. I can understand how it can so easily be misunderstood as ‘shyness’, ‘manipulative’, ‘oppositional behaviour’, ‘stubbornness’. We hear the phrase and immediately jump to the misunderstanding that the child is selecting when to speak and when not to. It’s more accurate to understand it as the mutism is selective, not the child. It gets it’s name from the way that the mutism is only seen in certain contexts and not in others not because it is implying choice.

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The most helpful way I’ve found of thinking of selective mutism is to focus on the physiological. It is known that in moments of extreme anxiety or panic the body’s fight/flight/freeze mode affects us physically. Our body’s hormone balances for example are completely upturned, in order to get ready to run or fight. One of the physical affects can be the seizing up of the muscles needed for speech – including the vocal chords. So in that situation of panic speech is simply not physically possible. And that is selective mutism. An outworking of extreme anxiety. For some this anxiety is seen in group contexts (even of familiar people); for others with strangers; for others it is in particular places; for some when under the pressure of a direct question; or simply in front of others. It stems from social anxiety, social phobia and anxiety about demands. Responding to selective mutism as if it is ‘stubbornness’ or ‘manipulative behaviour’, or ‘a shy phase’ ignores and adds to the anxiety.

Selective mutism can affect autistics as well as others. And it can make life very challenging, and scary – imagine needing something and being completely unable to ask for help and get support. It makes being in new situations and places especially difficult when you know you cannot stop and ask for directions or check something with the teacher or your classmates. It can make learning hard work when you are unable to ask for help or clarification. It can make friendships and social times, like lunch breaks, really challenging.

There is really helpful advice and explanations at SMIRA.

I especially like way the article ends:

 Celebrate your child’s unique qualities
We cannot change the personality of SM children – and wouldn’t want to! They are naturally sensitive individuals who take life seriously and set themselves impossibly high standards. The downside is a tendency to be overwhelmed by novelty, change and criticism; the upside is an empathetic, loyal and conscientious nature.

How to support?

  • be kind – patience not pressure
  • surprises add to anxiety
  • give more time than you think for an answer
  • praise achievements
  • disappointment and disapproval are definitely not wanted
  • support the anxiety
  • help find safe ways and places to calm and regulate
  • enable coping strategies for anxiety
  • remember it is selective but not selected

It is not easy to truly understand or appreciate another person’s experience of anxiety – we all get worried about things from time to time, and it’s all to easy to assume other’s worries feel and affect them the same way that ours affect us. Our expectations are too often shaped by our own experiences. But to be able to support we need to put those expectations to one side and take on board the extreme level of anxiety being experienced by someone with selective mutism. It is not a choice. It will not be easily and quickly ‘got over’ or ‘snapped out of’. It is quite paralyzing. And can be so very isolating.

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sensory pit-stops: invitations to find calm

We are counting down now to beginning a new term – new teachers, new classes, and for two of mine new schools. There is definitely a need for me to be providing and enabling as many calming sensory activities as possible – yesterday I just couldn’t keep up!

Our emotions and physical responses to them are so complex I wonder how any of us actually learn to regulate ourselves. For many of us no doubt it comes easier than for others. Certainly if our understanding and recognition of different emotions is still a work in progress then instinctive self regulation is going to be almost impossible. It has to be learnt. So the more varied and frequent opportunities to learn to become calm and collected when feeling huge emotions the better.

These are some of my favourite activities to leave out dotted around the house that can become calming sensory pit-stops:

  • cornflour gloop – best in a room with a wipeable floor: cornflour and just enough water to make a gloopy paste in a shallow bowl or tub. This is great, it gives a sensation of resistance when poked and pushed and also soft fluidity when dangled or allowed to ooze back into itself. To dispose of it afterwards I leave it to dry out a little and then put it in the bin. Bits on the floor or table leave to dry then brush and scoop into the bin. (It blocks drains if washed down the sink)
  • playdough – We make our own, and then for extra sensory input can give it a scent like lavender, citrus, peppermint etc. The best bit of making your own is that it needs to be kneaded like bread dough as it cools down and the warmth with the kneading is amazing… just check it’s not still very hot before you hand it over to the kids. (Our recipe came from a good friend: 1 cup flour, 1/2 cup salt, 2 tbsp oil, 2 tsp cream of tartar, 1 cup of water with food colouring in if desired… beat it together as it heats up in a saucepan.)
  • painting- not perhaps something I would leave out casually all the time but this can be really absorbing; big plain paper, brushes, sponges, fingers etc, paint & imagination.

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  • wobble board – we have a circular board with a curved underneath that was being sold as a toning piece of equipment for keep fit, but we use it simply for fun balancing. When movement and concentration come together it can prove very calming. And this can simply be left out in a place with some space to be used in-between things, or on the way from one part of the house to another.
  • Animals – in our house one of the key strategies for self-regulation is to spend time with animals. Before we had the kittens days like these would be better if the guinea pigs came in and were easily available for cuddles. Now of course the kittens are always to be found somewhere in the house, and thankfully they crave attention and fuss. The only problem is when the attention given to one of them becomes a stress trigger for a sibling- either because they are not ‘doing it right’, or the kitten was found in someone else’s space, or its not considered to be ‘their turn’… but despite those (very frequent) moments I still think being in physical contact with animals brings such a lot of calm and reassurance.
  • blankets – and hot water bottles which add weight and warmth. Always on the sofa and beds ready to snuggle up in, hide under or tuck in tight around you.
  • water – another I cannot simply leave out, but there are so many opportunities during the day whether it’s to encourage lingering over hand washing, helping with some washing up, or allowing some pouring play between jugs tubs and cups. And there’s always the bath & shower on a day without time pressure which for our youngest is probably one of the best ways to really ground her when very anxious. Yesterday we resorted to a bath in the afternoon – and I got time to clean the bathroom at the same time!
  • a familiar activity – whether it’s a film that’s been seen a hundred times, reading a book that is known word for word, or a puzzle that’s a favourite, or a sorting activity with buttons or marbles etc that always gets done in the same way, a familiar activity can be very soothing.
  • music – a tricky one to balance everyone’s different needs at any given moment but brilliant nonetheless. As I write A is playing the piano which he gets completely absorbed in. B likes to listen to music on headphones which shuts all other hustle & bustle out. T loves to move and sing, and tends to want music loud when she wants it. Dance mats, dance games on the Wii, and listening to songs over and over again seem to really help T… but for the sake of everyone else we try to manage how long each time! Another absorbing and regulating music & movement activity is hand clapping rhymes and other nursery rhymes. T still asks for ‘this is the way the lady rides’ (a bouncing on a knee rhyme), and loves ‘a sailor went to sea, sea, sea’ etc.
  • hugs! – almost always on their terms of course, but being available for regular deep squeezing hugs is essential – and so easy, no prep required!

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  • marble bowl – simply marbles in a shallow wooden bowl. They can be swirled, spun, sifted through fingers and listened to as they spin gradually getting slower and slower.
  • mini sensory bin – again a simple bowl or tray, with rice, pasta, cous cous or sand in that is simply available to arrange things in (small world play figures or stones, shells, beads etc) and feel.
  • balloons – not for everyone I know, but the process of blowing up a balloon slows breathing down, and makes us take deep breaths in. And they are really fun when you don’t tie them but fill them and let them go over and over. And for the daring moments when the thought of the clearing up doesn’t phase you, balloons with some water in that can be held (it has a weight to it) and that move about in your hand are fascinating too.
  • dens – safe, inviting spaces to retreat into and block out the hustle and bustle. Soft glow light, flumpy cushions, paper & pens to doodle with and some cuddly toys.
  • tearing and cutting – leaving out an old newspaper or magazine with scissors if that’s appropriate. Prepare for easy to clear up mess, but T can be absorbed in cutting, tearing and scrunching paper for some time and this can be a good distraction from the times when anxiety begins to show itself as restless frustration.

 

comfort zone

 

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In our household we talk about retreating to our ‘caves’ – the little cosy, personal spaces that are our escape places to retreat to and shut the world out of. They are not actually dark, or particularly cave-like at the moment but they have been at times; tents, dens, hidden corners under beds – even under sofa cushions, duvets or in kitchen cupboards at times. Safe ‘dark caves’ are actually really important. We need times where we can relax, guard down and know we are safe and all is well even if only for a short time.

Being ‘out of your comfort zone’ – being in situations, or doing tasks that are really challenging for you can be so tiring. I have been reminded of it this week. It was my turn to lead the singing at the toddler group – something I have been doing in different toddler groups for years yet still very out of my comfort zone! Without fail I come away from those few minutes feeling tired and drained. Context is everything isn’t it, I have sung with my own children, nieces and nephews since forever. How different it feels in a room full of expectant little ones – and their carers.

Yesterday I had a big out-of-my-comfort-zone day. It was an RE ethical debate for the year 10’s at secondary school, and I had been invited (and had willingly agreed I might add!) to be part of the panel giving my views on abortion, euthanasia and faith schools and then ready to answer questions afterwards. Exciting, invigorating, inspiring questions and insights from the students alongside shaking hands and legs and racing heart! I was in need of a darkened room once it had finished! But felt pleased to have taken part. Having the chance to explore different points of view, different faith beliefs and the complexity of these tough ethical questions is so vital. I’m always so thankful that these kinds of debates were always opened up for us around the table at home growing up and that we were always encouraged in finding our own thoughts and listening to the viewpoint of others.

On days where shaking hands and legs, and a racing heart are a big part of the experience a safe retreat space is needed. I would hazard a guess this is a daily experience for many autistic people facing situations, contexts and tasks that are challenging day in day out.

I spent some time at toddlers enjoying studying the church ceiling with a little one who I suspect was escaping to a safe retreat place for a few minutes, away from the noise and happy bustle of the large group (T does the same sometimes – often through a camera lens). We can find retreat spaces even in the most unexpected. Different places giving us that much needed rest at different times. Our loving Father God knows we need these retreat spaces. He offers himself as a hiding place for us. His presence the ultimate safe space of retreat. And just like we fill our cozy caves with things that we need to calm, and refresh us, God our Father’s presence is full to overflowing with love, faithfulness, acceptance and peace for us.

‘..hide me in the shadow of your wings’ (Ps 19:8 NIV)

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‘Come to me, all you who are weary and burdened,

and I will give you rest’. (Mt 11:28)

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
 I will say of the Lord, ‘He is my refuge and my fortress,
    my God, in whom I trust.’

                         ………

He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart. (Psalm 91: 1,2,4)

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