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Who curates the autism resource, Spectra.Blog?

Who curates the autism resource, Spectra.Blog?

My name is Kathy Carter, and I curate Spectra.Blog – an #actuallyautistic autism resource that is most definitely about empathetic awareness and acceptance. Many posts are written by myself, although some will be by other contributors, and they will be credited. The Spectra.Blog website launched in 2017.

I am a writer. I have written professionally since the late 1990s, and am also undertaking professional studies and qualifications within the field of autism.

Anyway, down to the juicy stuff; I am on the autistic spectrum. My diagnosis is high-functioning autism with an Asperger’s-type profile, so I am an Aspie! Yay! I have a badge and everything*. I was diagnosed in my 40s, like many adults who begin researching autism spectrum conditions when they suspect their family member or child is autistic. Autism does run in our family, although I am not a fan of attaching onto other people’s labels and identities, and talking about them specifically; although suffice to say, autism spectrum conditions are ‘close to home’ for me!

It’s safe to say that autism spectrum disorders are now one of my Special Interests; I love reading about autism and helping to spread the word about ASDs (autism spectrum disorders) / ASCs (autism spectrum conditions) in a positive and well-informed way. Like I say in every blog, I don’t claim to be an expert or state definitive facts about autism; what I write is based on my own experiences and exposures. Thanks for reading!

*I don’t have a badge. They don’t give you a badge. I wish they gave you a badge.

Gaining autism assessment in the UK – including Pathological Demand Avoidance or PDA

Gaining autism assessment in the UK – including Pathological Demand Avoidance or PDA

The NHS funds autism assessment in the UK, although many local authorities are facing budget cuts. If a child is deemed to require autism assessment, it is usually the parent, teacher, or the nursery or preschool placement provider who will first flag up any issues. (For Pre school aged children, health visitors are also usually involved. NB – gaining a diagnosis of Pathological Demand Avoidance or PDA (in Britain at least) is currently challenging in some geographical areas, in line with budget cuts within the field of autism assessment in general.

Specialists & teams

For a child, once they’re of school age, then the child’s teacher (in conjunction with the special educational needs coordinator) will become involved, and liaison will occur with any number of specialists or teams – e.g. the community paediatrician, clinical psychologist, speech and language specialist, mental health clinician or team, e.g. the Child and Adolescent Mental Health Service, or CaMHS. (There may be several levels and stages of appointment, e.g. G.P, followed by community paediatrician, followed by a board assessment with a panel of experts.) For adults, the first port-of-call is usually the G.P, who can then refer to the local autism assessment provision for that local authority. (Check out our blog on ‘What to expect during your adult autism assessment’ HERE.)

Private assessments can also be made by clinical psychologists, and again a board of healthcare professionals like speech therapists and occupational therapists may also become involved in the process. This is because autism is assessed by another individual in an observational manner; it is rightfully important that the process is not taken lightly. In some cases in the UK, an exterior body or company that has effectively won the contract to undertake autism assessments will perform these referrals on behalf of the doctor or local authority or team who referred the child or adult for assessment.

Gaining a diagnosis of PDA

Gaining a diagnosis of PDA (in Britain at least) is currently challenging in some geographical areas, in line with budget cuts in autism assessment in general. It seems to be a sad fact that some clinicians are simply not educated enough about PDA; the author of this piece was, frustratingly, told straight from a supposedly ‘expert’ doctor that: “The jury is out on PDA.” Implying that it isn’t definitively a condition.

Well this isn’t the case, as PDA is recognised by the National Autistic Society as an autistic spectrum condition (ASC), and any relevant clinician in the UK is fully able to make a diagnosis of PDA within the spirit of their usual diagnostic guidelines, along the lines of: ‘Autism Spectrum Disorder with a Demand Avoidant Profile’.

Postcode lottery

There is relatively small number of private clinicians in the UK who are renowned for having the capabilities and clinical exposure to diagnose PDA as an autistic profile; regrettably however, due to the small number of clinicians with the relevant levels of experience in this area of autism diagnosis, it does seemingly become somewhat of a postcode lottery to get this diagnosis on the NHS!

Because adults and children with PDA are some of the most socially capable of all people on the autistic spectrum, diagnosis can be especially tricky, as the assessment window is just a snapshot of them on that day; and if they happen to be very socially adept and socially manipulative on that day (and this is especially true of children), it may be hard for the less experienced clinician to see the more discreet signs.

NB – it may be necessary to request an ‘out of area referral’ for PDA assessment, in which case the individual needs to ask their G.P about the guidelines set down by the Local Commissioning Group (CCG). There is a blog called ‘PDA Guidance‘, which explains the process well, in a post called ‘Requesting an out of area referral’ – read more HERE.

ALSO – you can check out our simple PDA guide HERE. The PDA Society has some great resources on What it feels like to have PDA, and also has a great timeline of the History of PDA.

There is a useful graphic which we have shared below called ‘The family of pervasive developmental disorders’, sourced from the excellent website “PDA Resource” which has links to various recommended websites, blogs, documents, graphics etc. This graphic is by Newson, Marchal and David.

Read the PDA Society’s diagnostic guide HERE.

Please note that as we always say in each blog post, here at Spectra.blog, we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences. We do not claim to be experts on any form of autism. Here in the UK, it is widely known that PDA assessment differs from different territories of the world, so it is a good idea if you are seeking an autism diagnosis for you or your loved one to arm yourself with all of the relevant information from your local authority and diagnostic healthcare body.

Read more about autism assessment in our blog below – updated summer 2018.

Clarity – explaining the diagnostic criteria for autism spectrum disorders (autism spectrum conditions) – inc. Asperger Syndrome

“Please understand me – my walls came falling down” – autistic shutdown – what does it mean for someone on the autism spectrum?

“Please understand me – my walls came falling down” – autistic shutdown – what does it mean for someone on the autism spectrum?

“Please understand me – my walls came falling down”

So, a common question asked of someone who is autistic is: what is the difference between meltdown, shutdown and even burnout? This particular blog article will focus on autistic shutdown.

Firstly, it’s really important to explain that because every autistic person is an individual, they will experience meltdown, shutdown and autistic burnout in different ways.

Too many apps or browsers or programs open

Shutdown, for someone with an autistic spectrum disorder (ASD), can be described as feeling like a fairly old computer that’s not equipped with all the modern update software – it simply has too many apps or browsers or programs open. Autistic shutdown is when you need to start closing down your programs to conserve energy, and generally only the most important program (which if you are a mammal, will be the ‘parent program’), is left on. Everything else closes down to a degree, just to conserve your own battery life – as if you keep going at your current level, you will certainly head for an autistic burnout, which we will talk more about elsewhere on Spectra.blog.

Being in autistic shutdown is self preservation mode – it is a mode that happens with your consent to a degree, as it is something that needs to happen to re-calibrate your body.

Signs of shutdown (for the author of this piece anyway) would include one’s voice getting increasingly monotone; finding it harder to make eye contact with people; throat feeling tight when speaking; general lethargy; becoming panicky, anxious or grumpy; and finding it harder to smile and express emotion.

The glass box

But the overriding feeling of shutdown for an adult or child on the autistic spectrum is one of existing in a glass box – you are one step away from everyone, looking out of your box; if someone asks you how you are feeling, the truthful answer is probably: “I am not.” Because your feelings are one of the programs that have been temporarily turned off, while your body re-sets.

Autistic shutdown can be spotted if you (as the autistic person) know your individual signs and triggers; or if you recognise them in your loved one. Shutdown can last any length of time; it really depends on how you are feeling and what level of self-care you are able to administer, and what challenges are in your life. Coming out of it might simply involve a good chat with a loved one, or removal of some external stress, some good rest, or simply some time-out; e.g. time away from external stimuli, people and interaction. Maybe some ‘duvet days’ in bed. Don’t underestimate the importance of recovery – if a person had a migraine, they’d probably retreat to bed to recover – and this is not dissimilar.

“Shutdowns are a person’s response to reaching crisis point”

The UK’s Autism West Midlands organisation describes autistic shutdown as follows: “During shutdown, a person may either partially or completely withdraw from the world around them. They may not respond to communication anymore, retreat to their room or lie down on the floor. They may also no longer be able to move from the situation they are in, no matter what it is (for example, a shopping centre or a classroom). Shutdowns are a person’s response to reaching crisis point.” Read more HERE.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences.

It’s a cliché perhaps, but many people with classic autism and high functioning autism love music, for many reasons. What better way to deal with life than to escape within a beautiful song? In the words of Palmer and Kraus’ beautiful ‘Please Read The Letter’: “Please understand me – my walls came falling down. There’s nothing here that’s left for you. But check with lost and found.”

 

Asperger’s, autism / ASD – what does happiness mean and how do we find contentment?

Asperger’s, autism / ASD – what does happiness mean and how do we find contentment?

“Clap along if you know what happiness is to you”

I wanted to explore what happiness means for an autistic person. Many clinical psychologists ask that question – what makes you happy? – during their autism spectrum disorder (ASD) assessment.

If you’re seeking some definitions of the word happy, you’ll find descriptions like joyful, cheerful, blissful, exultant and jovial. Which all sound a bit… over the top. Autism, as a spectrum, is of course different for everyone who has the condition. But, of the high-functioning-autistic people that I know, I wouldn’t necessarily describe many of them as exultant and jovial. For many autistic people, their demeanour can appear to be more quietly observant; sometimes serious. It doesn’t mean they wouldn’t describe themselves as happy, of course! Just that the way they communicate can be softer, and more introverted than some ‘neurotypical’ peers who wear their hearts on their sleeves.

Certainly, there can be an autistic ‘mask’, one that we may even be using to subconsciously deceive ourselves as an autistic person, that seems joyful in a slightly manic way. As if we’re somehow trying to prove to ourselves and the people we’re with that we are, indeed, happy!

For anyone whose autism spectrum condition (ASC) means they have sensory processing issues, on some occasions this can lead them to appearing overtly happy or joyful, especially in young people. Specifically I am referring to issues of hyposensitivity, or sensory seeking, whereby people (notably children on the autistic spectrum) ‘seek’ more sensory stimulation, e.g. jumping, crashing, spinning and bumping into things and people, often accompanied with ‘manic’ behaviours, noises and seemingly-happy laughter. (The UK’s National Autistic Society has more info HERE.)

In adults, I believe autistic people who use alcohol as a way to alleviate their social communication problems can appear ‘the life and soul of the party’; they may seem outgoing, animated even, and seemingly happy. But is this alcohol-enduced state – perhaps similar to the child who uses spinning to change his mental and emotional state – actual happiness?

Satisfaction and ease

After some consideration I think that ‘contentment’ is a good gauge of happiness – for many people, but especially for someone with autism. Defined as ‘satisfaction’ or ‘ease’, this more accurately describes the feeling of ‘balance’ that a person with autism feels when content. Repetitive thinking patterns slowed down? Anxiety reduced? Sense of serenity or calm washing over you (or the autistic person who care for)? Not feeling the need to ‘mask’ and hide your feelings? Smiling seems natural and easy? This is surely contentment.

Although this theory applies to anyone with an ASD/ASC, for people with a high functioning autism profile, e.g. Asperger Syndrome, who may be trying to juggle family life, the daily grind and perhaps the workplace (maybe without an autism diagnosis), contentment is key. This group of people are described as high functioning, as they can generally appear to function well in a neurotypical world. If I could offer any advice to someone who cares for a person with autism, especially a child or young person, along the lines of finding happiness, it would be to let them access contentment. This could be by allowing them to engage in (or talk about) their special interest, but equally it could be just sitting at home quietly listening to their favourite music, with minimal conversation. It could be sitting on a picnic blanket in a beautiful outdoor space, without socialisation. In any case, if you are seeking happiness as an autistic person, or hoping that the autistic child you care for can become happier, try to work out what it means for you and your family, and think laterally – it may not be the bells and whistles and all-singing-all-dancing happiness depicted in the movies. A quiet, contended mind can be the happiest feeling of all.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences.

(Farrell Williams’ jaunty ditty ‘Happy’ may be full of mainly nonsense lyrics, but here’s some sensible advice: “Clap along if you feel like happiness is the truth; if you know what happiness is to you.”)