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What autistic traits are you born with?

What autistic traits are you born with?

One of the most interesting aspects of autism spectrum conditions is the debates and discussions you can have about what you are born with (in terms of so-called autistic traits and behaviours), and what manifests over time. (A quick heads up – we liken it to being born with a genetic map; an autistic sat-nav that is pre-programmed at birth; the author proposes that we and our families impact on this ‘map’ as the autistic child develops. E.g., let the autism go unsupported and / or undiagnosed, and push the child into situations not suited to his or her autistic sensibilities, and ‘autistic traits’ will prevail. But read on for more…)

“Anyone who is autistic is born autistic…”

Firstly, let’s be clear: anyone who is autistic is born autistic. (There’s a fair bit of information online on detecting autism in babies – there’s brief info on the UK’s NHS website HERE). There is very little concrete information linking non genetic causative factors to autism. Scientists are currently identifying ‘susceptibility genes’, e.g. genes that leave us susceptible to being autistic; meanwhile, studies HAVE found some links to autism with pregnancy-related factors, including gestational diabetes, maternal medication and birth injury. Essentially, there are genetic and environmental factors at play (that are being constantly researched) – and it is generally thought that (for people of all neurologies), our genes offer pathways for us to go down, that our environment ‘opens up’ for us.

In any case: autism does not come and go like a virus – the author of this piece was (inadvisably and incorrectly) told by a very experienced health visitor that the health visitor had seen cases of what she described as transitional autism, that a child grows out of; but this is a very  ill-informed view of the child’s situation – the child was perhaps misdiagnosed in the first place, or maybe his environment was managed to a degree, so that his more overt autistic traits and behaviours reduced, during that period. Either way, it is a worry that a health visitor mentioned it as Truth, in passing! Autism does not regress – rather, individuals and their families learn how to make the triggers and stressors (for behaviours that are more overt or concerning) manageable, and this can seem like some kind of transition. 

Are all of your so-called autistic traits always present from birth?

So, if you are born autistic, what does that mean – are all of your autistic sensibilities always present from birth, just waiting to develop; or is it a series of connections in the brain that develop and work synergistically as a person matures, and their environment interjects, creating traits as the neurons form connections, or synapses, within the brain? Given that some autistic traits are apparently linked to a more passive profile, while some traits (like severe demand avoidance or panicked behaviours) are linked to more overt profiles, just WHEN does the person ‘slot into’ their autistic profile – if there even is such a thing? Is it at birth, or is it as they mature, and the neurological connections in the brain form the patterns that will stay with that autistic person as they grow older?

(NB – neuroscientists propose that autistic people have significant ‘structural differences’ in the amygdala regions of the brain – the amygdala being involved in emotional and social behaviour – as well as the hippocampus area, involved in memory, and the anterior cingulate gyrus, which is the ‘social’ part of the  brain.)

Less PDA traits?

Families of autistic children with PDA (Pathological Demand Avoidance) know that when demands are reduced and the causes of anxiety are managed, the child may show less overt traits, e.g. fear of expectations and panicked responses. Obviously this does not mean that the PDA has gone away, just that the child and the family are able to manage the triggers for anxiety and panic attacks (or meltdowns) more effectively. 

Some clinical psychologists believe that autism neurologies are ‘variable’, in that the autistic traits and behaviours will manifest themselves differently according to the person’s environment – something that the author of this piece would concur with. (In fact, that’s what the weighing scales that we use as our Spectra.blog logo mean – the fact that coping with autism’s challenges, and creating a balance in our autistic lives, is about the balance between environmental (and social) triggers or autistic stressors, and the autistic person’s own skill-sets.)

As autistic sensibilities often tend to be driven and heightened by anxiety (for example related to socialisation challenges, perfectionism, or the pressure to ‘mask’ and fit in), if you can reduce the triggers for anxiety, this will generally reduce the manifestations of the adult or child’s autistic traits. Autism of course doesn’t go away in this case, but the anxious behaviours (maybe obsessive vocal stims, meltdown behaviours or panic attacks) can be reduced.

So, going back to our original point at the start of this post, what autistic traits are we born with? 

“It’s entirely possible that the autistic traits may ‘lie low’ for a while, while the more neurotypical parts of the brain take the lead…”

Here’s a theory, based on the author’s own familial experiences. Even though an autistic child has brain that is wired to be autistic, some parts of the brain are presumably functioning in a more neurotypical way, and as the child matures and hopefully their environment and the triggers for anxiety are managed, it’s possible that the more anxiety-based autistic traits may ‘lie low’ for a while, while the more neurotypical parts of the brain take the lead. The child with familial and educational support in place will also be learning his or her own triggers for anxiety-driven responses, so perhaps it is less ‘neurotypical parts of the brain’ taking the lead, and simply the child’s own management of triggers and stressors that sometimes makes it appear that the less desirable, anxiety-led autistic traits may sometimes ‘lie low’?

As a parent, this ‘lull’ could lead us to suspect that we have somehow changed our child’s autistic balance somehow, or that the autism is going away. Obviously the latter could not be true – once autistic, always autistic – and speaking with autistic adults with PDA, the overriding opinion is that your autistic profile cannot change or flip between one profile and another. (E.g. between PDA autism, which is driven by an anxiety-led need to be in control, and a fear of uncertainty, and autism.)

Writing as the parent of a neurodiverse child, this author can acknowledge that there are lulls and cycles all of the time, with the lulls showcasing more relaxed and capable times (for the child), and the more challenging times showcasing social and sensory difficulties that can lead to meltdowns and anxiety.

This of course hasn’t answered our original question – which it is impossible to answer universally. The author’s personal opinion is that we autists have a genetic map, a genetic autistic sat-nav that is pre-programmed at birth; and that we and our families impact on this ‘map’ as the autistic child develops. Instil self awareness, self esteem, understanding of the child’s neurology, an idea of their triggers for over-stimulation, and coping mechanisms to utilise when their autism has over-whelmed their processing skill-sets, and the ‘traits’ associated with anxiety will reduce. Let the autism go unsupported and / or undiagnosed, and push the child into situations not suited to his or her autistic sensibilities, and the ‘autistic traits’ will prevail. 

In any case, we hope the article has provoked some interest and debate, and raised some interesting points for anyone interested in autism research! NB, there’s a doctor called David Eagleman, a renowned neuroscientist, whose work within the  field of neuroscience sometimes crosses over in to autism research; check him out, if you’re interested.

Furthermore, the website of Advanced Sensory Integration Practitioner Julia Dyer has some useful information on autism and neuroscience that serves as a pointer for further research, for anyone interested in finding out more – see the page ‘Autism and Neuroscience’.

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. 

(You may also like this BLOG on functioning labels).

Finally, 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 quirky song? In the words of Morcheeba’s ‘Be Yourself’ – “I’m sick of satisfaction and living in a drought. Just be yourself, anyway that you want to (anyway that you can).”

What to expect during your adult autism assessment

What to expect during your adult autism assessment

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) 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.

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.

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

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 am also undertaking professional studies and qualifications within the field of autism (2018-2019). My fourth book (and my first concerning autism) is scheduled for release summer 2019, titled: ‘Autism from A-Z: presented by Spectra Blog‘. (I also hope to undertake counselling training / qualifications (2019-2023), and thereafter to specialise in working with people with anxiety disorders.)

Anyway, down to the juicy stuff; I am on the autistic spectrum. My diagnosis is 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 a family member is autistic.

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

Gaining autism assessment in the UK

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.)

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.)

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). 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. (It is now somewhat dated, but still interesting).

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.

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