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.)
- 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.
- …Refusal – School 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).
- 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.