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What to expect during your adult autism assessment

What to expect during your adult autism assessment

What to expect during your adult autism assessment

This article was written in 2017.

It’s very hard to generalise about what to expect during your adult autism assessment, as each country and health authority has different procedures; however, I can explain my procedure here in the UK when I was diagnosed in my 40s, following an increase in my own knowledge-base about autism. (Read more about me HERE).

Apparently, attending an adult autism assessment with coloured contacts, spangly make up and a flower in your hair marks you out as ‘Quirky’.

Following a familial link to autism, I started to recognise that I was probably on the spectrum myself. My doctor referred me after an initial consultation (possibly the fact I created a spreadsheet of colour-coded traits gave it away?!) and it took about six months for the appointment in my region of the UK to come through.

Assessments in my region are currently (at the time of writing in 2017) carried out by an independent organisation describing themselves as a ‘neurodevelopmental assessment and support service’ contracted to supply autism assessments for anyone over the age of eight years old; pleasingly, this third-party organisation replaced the ‘autism-team’ at my local authority, which seemed to consist of one part-timed lady called Brenda who was never in the office. I knew roughly when to expect the assessment and had called previously to check the time-scales, e.g. the aforementioned six months wait-time.

The environment was very relaxed and laid-back, and the office was staffed by very casual and friendly looking people. I arrived and initially saw an assistant clinical psychologist, followed by the clinical psychologist himself, and the whole process took about three hours.

I was fairly nonchalant, cool, calm and collected, and frightfully well informed about the whole thing; at least that is how I perceived it. When the report came back however it appeared that I was in fact very anxious-looking, displaying several autistic signs, e.g. mis-matching hand-and-vocalisation gestures, and not giving enough spontaneous speech, leaving the clinician in no doubt about my autisticness! However, and this is important I feel, he did note my GOOD eye contact, stating: “Throughout the assessment, she did use eye contact in a way to initiate, terminate or regulate social interaction, and her eye contact was reasonably well-modulated.” (It is frustrating when clinicians use the myth that ‘autistic people don’t make eye contact’ as a way of ascertaining a person is NOT autistic, e.g. if the autistic person DOES make eye contact. In my opinion our ability to hold eye contact is (a) learned, and (b) depends on how we’re feeling overall; e.g. we may reduce eye-contact when approaching shutdown.)

ADOS/DISCO

The clinician discussed my history and development, family, relationships, education etc and used both the Autism Diagnostic Observations Schedule 2nd Edition (ADOS-2), and the Diagnostic Interview of Social and Communication Disorders (DISCO) for the assessment. He was calm and kind and informal throughout and very patient when I became teary, which I did when discussing a family member, and also some other personal matters.

I left the office feeling a mixture of elation and relief and a jumble of other things, and left the office profusely thanking the psychologist. He may as well have handed me an envelope with big red writing saying “Autism – your new special-interest”, as at least that’s how it has been for me; literally every day since I started learning about autistic spectrum conditions and the familial links in our family, I devour information and studies and articles in an effort to become more well informed.

How do friends and family react?

I’m not sure how it is for everyone, but my initial belief that I may be autistic and then my diagnosis was widely met with what I deem to be a kind of ambivalence by those around me. Which is great really, in that people who like or love me do so whether or not I have an autism diagnosis, or an Aspie badge. I imagine it would be similar to a family member ‘coming out’ for the first time to me, and telling me they were gay; it wouldn’t be a big deal to me, and I wouldn’t ask them about it each time I saw them – why would I?!

Someone will of course ask you how it feels to be given the diagnosis (in my case, high functioning autism with an Asperger’s-type profile – although clinicians don’t use the term ‘Asperger’s’, these days); and you say things like: “Well it’s a relief really, it’s good to be told what I already knew, and I always felt different, and now I know why, etc etc.”

The first few weeks post-autism-diagnosis are spent getting used to the new label, telling certain people when the time is right, and having 1-million lightbulb moments of realisation about your past, your present and your future.

You have an autism diagnosis – but who are you?

As time goes on you may well start to question who the real you is; if you’re autistic and you made it to adulthood without you or your friends or family knowing about your neurology, you have undoubtedly been masking your struggles, in particular within the social sphere; this may lead you to then question who is the real you. If you’re within the workforce, your workmates probably know that you’re quirky, but do you have to put on a (probably unconscious) mask to carry out your job? Do you continually seek acceptance, being the natural people pleaser that you are, and in order to nail this social communication thing, do you sometimes use alcohol to help shape your social personality? And if you’re a lively social butterfly, is your social personality or persona the real you, or is there a more quiet and passive person underneath, who enjoys time at home with a book and pyjamas and quiet-time? There are so many more questions!

If you take some time to ask and answer the questions in that busy old brain of yours, you will start to find some answers and how long the process (of finding them!) lasts is anyone’s guess; my clinical psychologist told me that some people don’t want to accept their adult autism diagnosis, but that most people on the whole are relieved and positive. It is worth remembering that some of the more high-profile autistic people (and I’m thinking specifically of broadcaster Chris Packham, footballer Lionel Messi and actor Anthony Hopkins) did not shout their diagnosis from the rooftops initially, and presumably spent time coming to terms with it and finding themselves before sharing their autistic-selves with other people; this is probably a fine idea, but either way the autism community is grateful for their honesty.

A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences. Our own book ‘Autism from A to Z’ is now widely available – purchase here.

It’s a cliché perhaps, but many people with autism love music, for many reasons. What better way to deal with life than to escape within a beautiful song? As Bruno Mars says: “There’s not a thing that I would change, ‘Cause you’re amazing just the way you are…”

Autism Foundation Posts – Spectra.Blog’s FAQs and key posts and articles on autism spectrum disorders

Autism Foundation Posts – Spectra.Blog’s FAQs and key posts and articles on autism spectrum disorders

Autism Foundation Posts – Spectra.Blog’s FAQs and key posts and articles on autism spectrum disorders

Within the Spectra.Blog website, there are some key posts which we describe as our Foundation Posts on autism, covering the key areas of interest with autism spectrum disorders. (In date order…)

They are as follows (and will be added to over time!) –

A DUAL DIAGNOSIS OF AUTISM SPECTRUM DISORDER (ASD) AND ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD) – WHAT ARE THE IMPLICATIONS?

AUTISM AND ANXIETY – IF A IS FOR AUTISM, THEN IT IS MOST DEFINITELY ALSO FOR ANXIETY

WHAT IS AUTISM? SPECTRA.BLOG EXPLORES THE DEFINITION FOR AUTISM SPECTRUM DISORDER

ECHOLALIA – AN EARLY SIGN OF AUTISM?

BLACK & WHITE OR INFLEXIBLE THINKING – COMMON IN AUTISTS

AUTISTIC MASKING – EVERYTHING YOU WANTED TO KNOW

AUTISTIC BURNOUT – WHAT IT IS AND HOW TO AVOID IT

SO, YOU’VE HAD YOUR ADULT AUTISM ASSESSMENT – WHAT NOW?

GAINING AUTISM ASSESSMENT IN THE UK – INCLUDING PATHOLOGICAL DEMAND AVOIDANCE OR PDA

“PLEASE UNDERSTAND ME – MY WALLS CAME FALLING DOWN” – AUTISTIC SHUTDOWN – WHAT DOES IT MEAN FOR SOMEONE ON THE AUTISM SPECTRUM?

WHO CURATES THE AUTISM RESOURCE, SPECTRA.BLOG?

TOP SIX THINGS NOT TO SAY TO A PARENT WHO SUSPECTS THEIR CHILD MAY BE AUTISTIC:

MYTH-BUSTING: EXPLAINING EYE CONTACT FOR CHILDREN & ADULTS WITH AUTISM (ASD/ASC/PDA/AUTISM SPECTRUM)

AUTISTIC BADGES; DO WE NEED “HIGH-FUNCTIONING” OR “LOW-FUNCTIONING” LABELS? (ASD/ASC/ ASPERGER’S/PDA)

FEMALE TRAITS OF AUTISM (ASD) / ASPERGER’S… ARE YOU AN ECCENTRIC ANXIETY-SUFFERER; A FABULOUSLY UNIQUE PEOPLE-PLEASER; OR AN INTELLECTUAL INWARD-THINKER?

AUTISM AND MUSIC: DO AUTISTIC BRAINS HAVE DIFFERENT AUDITORY FIBRES? CAN AUTISTS FEEL MUSIC DIFFERENTLY? 

DO YOU ASK YOUR ASPIE LOVED ONE OR FRIEND HOW IT FEELS TO BE AUTISTIC? IF NOT, WHY NOT?

TONY ATWOOD’S THEORY OF ‘DISCOVERING’ THE STRENGTHS OF ASPERGER’S (HIGH FUNCTIONING AUTISM CONDITION, OR ASC) INSTEAD OF DIAGNOSING TRAITS AND DISORDERS

CLARITY – EXPLAINING THE DIAGNOSTIC CRITERIA FOR AUTISM SPECTRUM DISORDERS (AUTISM SPECTRUM CONDITIONS) – INC. ASPERGER SYNDROME

CLEAR AS MUD; DOES CONFUSION REIGN IN THE FIELD OF AUTISM SPECTRUM DISORDER DIAGNOSIS? (AND YES! – WE PREFER ‘CONDITION’ TOO!) BUT HERE’S WHY ‘DISORDER’ IS OFTEN USED, FOR AUTISTIC INDIVIDUALS… (ICD 10 / DSM-5)

IS AUTISM’S TRIAD OF IMPAIRMENTS OUTDATED? (ASC / ASD / ASPERGER’S)

TALKING TAKI-TAKI – DISCUSSING COMMUNICATION DIFFERENCES BETWEEN AUTISTIC INDIVIDUALS AND NEUROTYPICALS; AND WHY NT’S FIND AUTISTS ‘DIFFERENT’ (ASPERGER’S / ASD /ASC)

THE EMOTIONAL CUTLERY DRAWER OF SPOONS, AND THE ‘SOCIAL HANGOVER’ (ASD, ASC, ASPERGER’S)

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 undertook professional studies and qualifications within the field of autism. My fourth book (and my first concerning autism) was released in 2020, titled: ‘Autism from A-Z: presented by Spectra Blog‘. (I am currently undertaking psychotherapy training / qualifications.)

I launch my cognitive behavioural hypnotherapy (Hypno-CBT) practice, Arrive Therapy, in June/July 2021. I will be assisting neurodivergent people make positive life changes via aspects such as anxiety, self-efficacy, confidence, relaxation, self-esteem and addressing social anxiety concerns.

Anyway, down to the juicy stuff; I am autistic. My diagnosis was autism with an Asperger’s-type profile, so I am an Aspie! (Yes! I know all the issues relating to identifying as ‘Aspie’, after Hans Asperger’s revealed links with the Nazis.)

So, 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 a family member is autistic.

It’s safe to say that autism is now one of my Special Interests; I love reading about autism and helping to spread the word about autism 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

Gaining autism assessment in the UK

Gaining autism assessment in the UK

This article was written in 2017.

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, SENCO, therapist (language or occupational), 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, many practitioners’ lack of understanding and exposure to PDA, and also the newer diagnostic guidelines.)

Autism specialists & teams

For a child, once they’re of school age, then the child’s teacher (in conjunction with the SENCO or special educational needs coordinator) will typically 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 neurodvelopmental consultants, 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.

(Individuals seeking private autism diagnosis can do an internet search using their local search terms and localities, to see what provision is available. Waiting lists are typically somewhat shorter. Private autism assessment and diagnosis for children from reputable organisations who also perform assessments for the NHS/Local Authorities as well as privately, reportedly may garner more support from the child’s educators and schools).

Gaining a diagnosis of PDA

Gaining a diagnosis of PDA (in Britain at least) is currently challenging. Many clinicians are simply not educated enough about PDA; the author of this piece was told by an ‘autism expert’ doctor that: “The jury is out on PDA.” Implying that it isn’t definitively a condition.

PDA is recognised by the National Autistic Society as an autistic neurology, and clinicians in the UK are 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. (This article is now quite dated – please refer to our newer articles about diagnosis. The latest diagnostic guidelines, the ICD-11, can be found HERE; see also America’s DSM5 diagnostic manual. Clinicians may in theory use ‘ASD, Unspecified’ as the diagnosis, but note Demand Avoidant Profile on their notes, for a PDA patient, e.g. using the newer guidelines. Please note, the information supplied here is based on our own experience and exposure to the subjects, and is not in any way a formal form of guidance.)

Read more…

A short introduction to Pathological Demand Avoidance (PDA) – an autism profile

Autism’s postcode lottery

There is a 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 a supportive diagnosis on the NHS! (The clinician needs to note the ‘demand avoidant profile’ on the report, so that educators and families can use PDA-suitable supports).

Because adults and children with ‘PDA autism’ 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). 

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. 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; the information we post here is based purely on our own exposure and experiences. Please arm yourself with all of the relevant information from your local authority and diagnostic healthcare body. Local and national charities involved in autism diagnosis and educational health care plan allocations can potentially assist you.

Our book ‘Autism from A to Z’ is now widely available – purchase here.

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?

“Please understand me – my walls came falling down” – autistic shutdown – what does it mean?

“Please understand me – my walls came falling down” – autistic shutdown – what does it mean?

“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 who’s autistic, 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 autistic adult or child 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; the information we post here is based purely on our own exposure and experiences.

It’s a cliché perhaps, but many autists 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.”