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(1) #mygrandchildisautistic?! – how families and grandparents can support the parents of a newly diagnosed autistic child – including autistic labelling

(1) #mygrandchildisautistic?! – how families and grandparents can support the parents of a newly diagnosed autistic child – including autistic labelling

This is the first in a new series of articles aimed at helping families and grandparents learn more about autism, and also support the parents of a newly diagnosed autistic child, and of course the child themselves.

But firstly, why do we use the hashtag – #mygrandchildisautistic?! – with its implication of questioning surprise?

Because, to generalise, this is the first generation of grandparents whose grand-kids are gaining autism diagnoses in larger numbers than have been seen previously. Of course, many children are diagnosed (and have been diagnosed) with autism spectrum conditions (ASCs) over the years; but the current generation of parents in their thirties and forties would not have witnessed great numbers of children gaining autism diagnoses when they, the parents, were school age, in the 1980s and 1990s. Thus, a great many (current) grandparents did not see their own generation, or their children’s generation, gaining autism spectrum diagnoses in large numbers.

Today, many more parents are gaining their own autism diagnosis as adults, after researching ASCs in their children. But, thanks to a lack of exposure to diagnosed autism, and the fact that many grandparents don’t see their grandkids daily to witness the (often subtle) signs of autism in children, there can be a lack of understanding and knowledge when parents of newly diagnosed children share the news with families and care givers.

Here, we aim to answer come commonly asked questions that grandparents and other family members may ask of their young family members.

Why does he / she need a label?

This is a good question, and some people and clinicians will argue that labels (and becoming embedded in a diagnostic system), are detrimental. However, we believe that diagnoses of autism spectrum conditions / disorders offer a framework for support, understanding and services for the child. Diagnosis helps family members and educators understand behaviours, and potentially unlocks educational support for the autistic child. Here’s some food for thought: if a child who is visually impaired wears glasses, they aren’t labelled on a daily basis as ‘visually impaired’ – it is just part of them and their persona. Yes, it may make them stand out as seeing things differently, but it is just a diagnosis, and wearing glasses helps them function more easily in day to day life. Autism diagnoses have parallels. (Read our ‘What is autism’ blog HERE).

What’s causing this current epidemic of autism diagnoses?

There’s no epidemic – a percentage of the population has always been autistic. There’s just more awareness and clinical understanding of neurodiversity around now.

(And thank goodness – not so many years ago, people with neurodivergence were cruelly labelled with terms such as ‘feeble minded’.)

However, we can see why some people would raise concerns about the high levels of autism diagnoses seen now, when compared to previous generations. Rest assured though that there’s no epidemic, to use this term.

 

So – he/she (insert relevant ASC trait!) doesn’t like hair-washes; appears shy sometimes; struggles with maintaining friendships; gets upset with loud noises/busy environments.. etc). All children his / her age do that – it doesn’t make them autistic… that’s normal isn’t it?

That’s correct, and an autistic child behaves in ways that are normal because they’re normal too. The key for families is to understand the amount of times a behaviour occurs, and understand the frequency, and any patterns that are seen. Autistic children often display all the usual behaviours seen in their peers but they may be amplified. This is why an experienced clinician (or team) performs an in-depth assessment, as the signs of ASC (or autism Spectrum Disorder / ASD) are potentially complex, and can be masked or covered up. No-one needs family members (or friends/associates) attempting to diagnose a child as neurotypical or neurodiverse. That’s what the experts are for!

Finding out the child’s own individual autistic profile – what makes them ‘tick’, what causes anxiety, what relaxes them, etc – will help develop an understanding of their condition. (You can read an adult’s perspective on the ‘autistic profile’ HERE – it describes the different facets of one person’s autism; so-called ‘green’ or ‘neutral’ days, feeling relatively neurotypical; ‘amber’ or ‘fast brain’ days when the individual’s neurons are firing super-fast; and ‘red’ or ‘slow brain’ days, when everything is a little more challenging, sensory overload is abundant, and the brain feels over-worked. This individual’s experience may help give a picture to families of how autism behaviours and behavioural signs change, dependant on the environment, and the challenges facing the autist, from a social/sensory point of view.)

It seems like the parents of the child let the youngster dictate a lot, in terms of washing, bathing, food choices, and the clothes they wear. Why is this?

The above choices relate to sensory processing issues, as autists often experience sound, touch, smell, taste and sight differently to neurotypical individuals. Many parents of autistic children make daily compromises on aspects like nail-trimming, baths, hair-washes and clothing to reduce anxiety for the child. Put simply, exerting familial authority ‘just because’ it’s judged that a bath is required nightly, or that a jumper should be worn as it’s cold outside (for example), is rarely worth the battle. It’s worthwhile working out the child’s sensory needs (e.g. some autists are under stimulated in a sensory way, called hyposensitive, while some are more over stimulated, called hypersensitive. Many autists experience both.). Some children for example may benefit from black-out blinds in a bedroom that they stay in, or may prefer their bedding to be made of a certain material. Letting the child listen to music using headphones is sometimes a good ‘rebalancer’ or tool to recalibrate, although this does depend on the child and their sensory needs. Ascertaining the autist’s preferences will make everyone’s life easier, and more enjoyable!

You can read the second feature in this #mygrandchildisautistic?! series, including the following questions, HERE

*Surely behaviours like meltdowns are just like tantrums – how can we tell them apart?
*If the school and the wider family don’t see any autistic behaviours in the child, how can he / she be autistic?

Please also visit a further third BLOG in the series #mygrandchildisautistic?! To read answers to these questions –

*Why is routine so important to the autistic child?
*All children love birthday parties, fun social occasions and the like, don’t they? If the child is seemingly anxious and grumpy at such an occasion, they’re probably just tired, aren’t they?

Read our ‘Foundation Posts’ HERE. And check out our post on discovering ‘Aspie strengths’ 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/Conditions; 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. 

Autism and Asperger’s in the media – a round-up of the best autistic representations (ASD / ASC)

Autism and Asperger’s in the media – a round-up of the best autistic representations (ASD / ASC)

Until fairly recently, there has been relatively little content on autism spectrum conditions in the broadcast media; but WOW, 2017/2018 has seen that change massively. (There’s a great article on pbs.org that you may like to read, about autism on the screen in previous years.)

Rainman (Let’s get this out of the way first)

In recent memory of course, the most obvious media representation of autism is probably the film Rainman, a movie best described as ‘of its time’, depicting the journey of an autistic savant played by neuro-typical actor, Dustin Hoffman.

It has its detractors of course, and there are many Issues with the film. Interactingwithautism.com writes about some of them in their article on media representations of autism, quoting an expert as saying – “There is a danger of walking away from the movie with the impression that all autistic persons are savants and that all savants are autistic.. [and] the film concludes that [Raymond], and presumably other individuals with autism, are better off being institutionalized rather than living with their own family.” 

But many autists recognise the film’s important contribution, and nuanced elements. “As Charlie learns to truly love his brother as the movie unfolds, Raymond too seems to have ‘opened up’ and created a lasting emotional attachment with his newly reunited brother… [while] Raymond’s development of a loving bond with his brother should not be seen as him ‘overcoming’ his autism, it should be viewed as a relationship developed because of his autism…” Cassie & Therese note on their site autismmythbusters.com.

In our view here at spectra.blog, Rainman isn’t a misrepresentation of autism exactly, more a (dated) amplification of a character trope.

The Good Doctor

“The best representation of an autistic person I’ve ever seen on television…”

Elsewhere, Freddie Highmore’s recent ‘autistic savant’ part in TV’s The Good Doctor, while drawing praise for its inclusion of a (main) autistic character (although Highmore is neuro-typical), drew criticism from some quarters for yet another ‘savant’ character with a Hollywood Disability Superpower. (In fact, savantism of these kinds is rare.) BUT – many autists welcomed Freddie’s performance, and the show as a whole.

Writing on Slate.com, autist Sara Luterman states approvingly: “Freddie Highmore is not autistic, although he does a decent job portraying one of us on TV. When he plays Dr. Shaun Murphy, he has an ‘autism accent’, that unusual cadence that many of us speak with. He holds his body the way I hold my body. It’s the best representation of an autistic person I’ve ever seen on television.”

Atypical
In Netflix’s Atypical, the autistic main character, Sam, is described by Sara Luterman for Slate.com more disapprovingly as ‘hollow inside’. “Autistic people rarely get portrayed as real, complete human beings. In Atypical, [he’s] essentially a diagnostic checklist, not a whole person.

He’s hollow inside—there’s nothing in his mind except sex and penguins. The show isn’t really about Sam. The show is about Sam’s autism, and how it affects Sam’s family.

He is, in many ways, a plot device in what is supposed to be his own story.”


The Curious Incident Of The Dog In The Night-time

The Curious Incident Of The Dog In The Night-time is a book/play that, despite drawing praise for having a main character who has Asperger’s Syndrome, is actually a fairly uncomfortable read/watch, as the depictions are to a degree, inaccurate, and actually could be seen to be damaging to autists, promoting the view that autists have no empathy, may be aggressive, and are easily abused by others. At least, that’s how many autists feel!

Now, the publishers of the book don’t even describe the main character as being autistic/having Asperger’s, presumably due to the criticism. The author told the Hay Festival audience in 2012 that he had never specified any disorder [when writing the book], and was uncomfortable with the book’s status as a ‘handbook for autistic spectrum disorders’.

 

There are further programmes that have been made of course – here are some more recent examples of autism representation in the media –

Broadcaster Chris Packham’s fantastic, groundbreaking TV documentary, Asperger’s and Me

#actuallyautistic Talia Grant being cast in TV’s Hollyoaks

#actuallyautistic actor Jules Robertson’s ongoing role in TV’s Holby City

TV’s The A-word – with an #actuallyautistic cast-member, and a lead character who’s autistic

Saga Noren from the acclaimed Scandinavian TV crime drama, The Bridge

Julia, Sesame Street’s autistic muppet/puppet

CBeebies’ animation, Pablo, with an autistic cast

The new Power Rangers’ Billy Blue Ranger (played by RJ Cyler) – an autistic super-hero

Channel 4’s ‘Are You Autistic?’ – an ‘intro-level’ programme with some interesting elements, presented by autists

Finally, we also enjoyed an article called ‘Autism is a Creative Boon –  A list and celebration of 5 openly Autistic actors, musicians, and artists’, by E Price, which detailed the ‘usual’ autistic ‘celebs’, but in more detail than is usually seen.
Please do share any other resources about autism in the media with us!

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

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 / ICD 11 / DCM-5)

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 / ICD 11 / DCM-5)

Autism may be the most confusingly diagnosed and labelled condition across the entire world…”

Whilst we aim to be positive here at Spectra.blog, there’s so much that’s frustrating about the state of autism diagnosis, currently! (At the time of writing in June 2018). Or rather, there are inconsistencies and misunderstandings, as well as disparities, in terms of different clinicians, authorities, countries and territories, and their protocols. It’s no wonder that people new to the world of autism information are left feeling confused.

ICD-10 / 11 – UK

For example – a national (UK) training body offering a nationally-recognised autism qualification confidently (and incorrectly) maintains (at the time of writing in June 2018) that the three main autism diagnoses are ‘severe’, ‘high functioning,’ and ‘Asperger’s Syndrome’.

Meanwhile, up until summer 2018, the 2016 version of the ICD-10, (ICD being short for: ‘International Statistical Classification of Diseases and Health Related Problems’, the most commonly-used diagnostic manual in the UK), listed Childhood Autism, Autistic Disorder, Atypical Autism, Asperger Syndrome, as well as the clumsy ‘Pervasive developmental disorder, not otherwise specified’, as the main autistic categories.

(NOW, with the launch of the latest ICD-11 in summer 2018, only ‘Autism Spectrum Disorder‘ is stated, with varying sub-descriptions – see graphic.)

Meanwhile in America, within the DCM-5 diagnostic manual, clinicians are advised to also use the broad term Autism Spectrum Disorder, but with a numerical note of severity, and / or the additions of ‘With or without accompanying intellectual / language impairment,’ dividing the ‘severities’ from 3 to 1. (e.g ‘Autism Spectrum Disorder level 1’ is seemingly akin to an Asperger’s-type diagnosis, under the ‘older’ system).

To further confuse things, in real terms, there’s seemingly very little diagnostic difference between High Functioning Autism (HFA) and Asperger Syndrome. The differentiating factor is whether or not developmental and language delays were seen in infancy, but in all honestly, that’s surely often subjective, based on familial memories?

In any case, someone already diagnosed with ‘HFA’ doesn’t necessarily accept that they are similar in diagnosis to Asperger’s, and vice versa, perhaps due to how the diagnosing clinician or explained made their diagnosis.

Functioning labels

Another point is the functioning labels, (mild, severe, high functioning, low functioning), which DCM-5 and ICD-11-using clinicians now tend to omit, but that many people still use conversationally (as do, as discussed, some training providers of autism courses / qualifications).

Furthermore – what about the situation we alluded to at the start – that many people aren’t happy with the reference to ‘disorder’ in autism spectrum disorder, preferring ‘condition’? A great, valid point, but with BOTH diagnostic tools using ‘disorder’, how else is an individual to find out info and information, without searching for the correct diagnostic term?!

All in all, it is an extremely confusing situation – but perhaps with the UK’s recent publishing of the current version of ICD-11, everything may become clearer? Forgive us for what is essentially a blog in the style of a rant – but so many people, ourselves included, are frustrated and a little confused! Autism may be the most confusingly diagnosed and labelled condition across the entire world!

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

If you fancy some more ‘ranty content, you may also like –
Is Autism’s Triad Of Impairments outdated? (ASC / ASD / Asperger’s) – and  ‘Them V Us – disparity in the autism spectrum condition ranks (ASD/ASC/Asperger’s).’

 

Is Autism’s Triad Of Impairments outdated? (ASC / ASD / Asperger’s)

Is Autism’s Triad Of Impairments outdated? (ASC / ASD / Asperger’s)

Autism is often defined by the famous ‘triad of impairments’, a concept introduced in the late 1970s. (Wing and Gould.) Undertake any course of further learning about autism or read a reference book, and you will come across it as the gold standard of diagnosis regarding autism spectrum conditions (ASCs).

Our question is – Is Autism’s Triad Of Impairments now dated?

The Triad of Impairments is a tool describing ASC limitations – it’s sometimes described as including the three elements of Communication, Social Interaction and Flexible Imaginative Functions (which can also mean repetitive or obsessive behaviours; sometimes, the third element of the triad simply refers to ‘flexibility’ and / or ‘imagination’.)

The triad has also been described as impairments in theory of mind and executive dysfunction, and a propensity to ‘detail-focused’ behaviour.

However, with the revisions to America’s DSM-IV, e.g. as the various sub-types of autism have been amalgamated into autism spectrum disorders (ASDs) / ASCs, the triad as a concept is more frequently being condensed further, as just two elements: (1) impaired social communication and social interaction (as one), and (2) restricted behaviour/flexibility.

Our question relates to whether (1) the triad is retained at all. And (2) whether ‘impairments’ is necessary as a term, being a description with such negative implications?

A 2009 Study states: “Exceptional pioneering work in the late 1970s gave rise to the concept of the triad of impairments: impaired communication, impaired social skills and a restricted and repetitive way of being-in-the-world. This allowed a new way for professionals and families to understand autism; this was a transitional idea.”

Some experts are moving away from the triad, which is seen as a single explanation for the symptoms of autism – as found in the articleTime to give up on a single explanation for autism’.

The authors state: “Despite half a century’s research into ASD, there is little evidence regarding the unity of the three core areas of impairment [as described in the triad]. The triad of impairments can be fractionated, and should be studied separately.”

 

RETAINING the triad (and considering it imperative for our learning) could do two NEGATIVE THINGS:

(1)Inhibit the development of research into strategies to help autists. The same article states: “If different features of autism are caused by different genes, associated with different brain regions and related to different core cognitive impairments, it seems likely they will respond to different types of treatment.” This is why the authors recommend studying the three ‘triad’ elements separately, rather than looking for SOMETHING that causes all the three ‘triad’ elements.

(2)Support the notion that autism requires a cure. Again the article, which supports the idea of focusing on each element of the triad, instead of clubbing together the three traits, states: “Abandoning the search for a single cause [for] autism may also mean abandoning the search for a single ‘cure’ or intervention.”

The link with genes

An interesting 2008 study asked whether GENES affect the triad – e.g. whether the triad of autistic-like traits is mirrored at the genetic level; with separate genes contributing to each so-called impairment? The authors found that: ‘Each aspect of the triad is highly heritable.’

The authors stated that the ASC triad could have multiple causes, at genetic, neurological and cognitive levels, meaning that autism can result when a number of independent ‘impairments’ co-occur. The authors suggested that: “Some avenues of (ASC) research may be best pursued WITHIN, rather than across triad domains,” e.g. focussing on each element of the triad, rather than looking at the triad itself, as a non-negotiable platform.

There are other issues with the triad too. Does it take into account age and gender? Not really. A 2014 study hinted at ambiguity, and stated: “Findings regarding gender differences in the core triad of impairments seen in ASD remain ambiguous.”

Also, should the triad somehow incorporate sensory issues in autists, e.g. their over-or under-sensitivity to sounds, touch, light, temperatures etc? As this is surely a major element or factor for people with autism.

Impairment or the autie advantage?

Let’s move onto the term impairment – an objective term. A ‘New Scientist’ article states: “Auties, as some people with autism call themselves, don’t merely think differently: in certain ways they think better. Call it the autie advantage.”

A blog on SEN Assist sums our question of ‘impairment’ up well, with author Adele Divine stating – “The ‘triad’ is a helpful tool in that it highlights difficulties, which are common to those with a diagnosis of autism, but I have an issue with the word ‘impairment’. The dictionary definition of impairment is: ‘The result of being impaired; a deterioration or weakening; a disability… ‘The Triad of Differences’ would be less harsh. Differences may lead to difficulties, but with the right structures and supports differences can also lead to great discoveries. Many of the difficulties represented in the triad can also be positive character traits. The word ‘impairment’ does not suggest this.”

Focussing on autism’s positives

The existing triad does focus on impairments where an autistic person is concerned, but as we touched upon in our blog: ‘Tony Atwood’s theory of ‘discovering’ the strengths of Asperger’s instead of diagnosing traits and disorders’, perhaps we (as a group of interested parties) should focus more on positive autism traits, described by Professor Atwood as including aspects like consideration of details, a determination to seek the truth, and an original, often unique perspective in problem solving? (For interest, see Professor Atwood’s books HERE.)

As described on a blog for workshop provider, Autism Awareness Centre, autist John Simpson has created his own, more positive triad for the autism spectrum, which is:

*The need for predictability

*The need for motivation

*An uneven cognitive profile (splinter skills)

To conclude this rather lengthy musing, we’d love our followers’ feedback on the triad of impairments within autism – how valuable is it in today’s more enlightened culture and #actuallyautistic mindset, whereby autists promote acceptance?

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

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Tuesday, 15th May: Judy Eaton of Help 4 Psychology tells BBC Radio 5 Live why awareness of PDA (pathological demand avoidance, an autism profile) must increase

Tuesday, 15th May: Judy Eaton of Help 4 Psychology tells BBC Radio 5 Live why awareness of PDA (pathological demand avoidance, an autism profile) must increase

NEWS FLASH!

This Tuesday, 15th May, at 6.30am, Judy Eaton of Help 4 Psychology has been invited to the studio of BBC Radio 5 Live (UK) to discuss PDA (pathological demand avoidance), and help raise awareness of this autistic profile.

According to the PDA Society, an organisation that provides information and support for parents, families and teachers, PDA is currently recognised as an autistic profile. Key areas of concern for the individual are: ‘An anxiety driven need to be in control and avoid other people’s demands’, and ‘An Intolerance of Uncertainty.’

Read our blog ‘A short introduction to PDA /pathological demand avoidance’ HERE.

(The interview should be available on the BBC i-player afterwards as part of 5 Live’s programming.)