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Autistic badges; do we need “high-functioning” or “low-functioning” labels? (ASD/ASC/ Asperger’s/PDA)

Autistic badges; do we need “high-functioning” or “low-functioning” labels? (ASD/ASC/ Asperger’s/PDA)

There’s been a lot of information and discussion circulating online on the subject of autistic functioning labels, recently. A functioning label is essentially a binary diagnosis given to someone described as being autistic.

The labels are generally “high-functioning” or “low-functioning”, and the clinician diagnosing the autistic person makes a judgment based on the day(s) they see the person, taking into account the person’s ability to ‘function’, e.g. whether they can live independently, hold down a job and pass as neurotypical (NT) to onlookers. Many clinicians are said to also use IQ thresholds to help aid their functioning diagnosis.

“Take Naoki Higashida for example…”

But many people, autistic and NT alike, and questioning the vailidity of these functioning labels for autistic people. If you’re so-called low-functioning, and supposedly not able to live independently, and maybe non-verbal or pre-verbal, who has the right to label your functionality or intellect? Take Naoki Higashida for example, the Japanese poet, novelist, and essayist. He’s published more than twenty books of fiction and non-fiction, including the renowned “The Reason I Jump”, published when Higashida was 13, featuring FAQs about his autism (and since published in English with David Mitchell as ‘Fall Down Seven Times, Get Up Eight’) – we will provide a link in due course, for ease. Higashida would likely have been diagnosed as “low-functioning” as a child. “I can’t converse well, but this doesn’t mean I don’t think. It’s just that when I try to speak, the words that come to mind, disappear. Expressing what’s inside the heart and mind of my autistic self will always be problematic, I think,” he told TIME magazine.

The very eloquent Higashida is only low-functioning by other people’s standards, in terms of how he communicates. In the same article, he said: “Comparisons help [other people] evaluate their own situation. Sometimes I wonder if the human intellect can nudge us backward.”

Is it disrespectful?

A “high-functioning” label is perhaps also unhelpful – is one who is a high-functioning autistic superior to one who is low-functioning? Is the label disrespectful towards those who struggle in a different way?

Rights activist and writer Amy Sequenzia, self-described as a ‘non-speaking Autistic’, believes that the worst situation, in terms of the utilisation of functioning labels, is when parents insist on using “high-functioning” for their children to elevate their status among other autistics. “Besides being disrespectful of our accomplishments and our resolve to succeed against many odds, it is disrespectful of their own children’s existence,” Sequenzia says of this phenomenon, on Ollibean.com.

Sinister links

There are some sinister links to functioning labels for people with Asperger Syndrome, described by the writer Kieran on the Autistic Advocate as stemming from decisions made by Hans Asperger. “He chose to separate the intelligent from the not-so, as that was his remit from the Nazi Government, who funded and directed him. The Nazis wanted super smart children to the future leaders of The Third Reich, so Asperger found them,” Kieran writes.

Reporter Steve Silberman’s book ‘Neurotribes: The Legacy of Autism and the Future of Neurodiversity’: (described by the publisher as: ‘Up-ending conventional thinking about autism and suggesting a broader model for acceptance [and] understanding… [and] unearthing the secret history of autism, long-suppressed by the same clinicians who became famous for discovering it..”) goes into more detail – we will provide a link in due course, for ease.

So, what’s wrong with functioning labels? Firstly, let’s point out that when one is newly-aquiring information on autism (ASD/ASC/Asperger’s/PDA etc), the labels are somewhat helpful – and when one is given an autism diagnosis, a label can feel useful. (You’ve only just discovered WHY you had been feeling so misunderstood all these years – and now you have a LABEL!). It’s very useful when you’re trying to tell your family and friends about your autism diagnosis, to help them understand that autism is indeed a spectrum.

HOWEVER, as time goes on, as your friends and family are told, as you learn more about autism spectrum conditions, you wonder – do I really need a label? Am I high-functioning? Low-functioning? Level one autistic? Aspien? Aspie? It all becomes a little confusing.

It’s important to also mention the issue of words and descriptions like:

“BORDERLINE AUTISTIC.”

“HAS MILD ASPERGER’S…”

This has very little meaning. Autism is autism. The person described as ‘borderline’ is either autistic or not autistic, and if their ‘functionality’ in society is good, then they have adapted well, and developed suitable coping strategies and mechanisms. But describing their autism as ‘mild’ could be dismissive of their struggles to get to this life-stage, and their continued struggles ‘behind closed doors’.

(A slightly different subject is autism profiles, e.g. Asperger Syndrome and Pathological Demand Avoidance (PDA) – we wrote about this in the Spectra.blog article ”What autistic traits are you born with?’. These two profiles come under the label of ‘High-Functioning”. Do we need these sub-profiles? That’s a discussion with varying opinions!)

To conclude, here at Spectra.blog, we believe that each autistic person should decide whether or not they want to use the functioning badge that they were metaphorically given at diagnosis. If it helps them navigate their own personal autistic journey, then why not? But if the use of “High-Functioning” is used to separate and differentiate different autistic people in a derogatory way, then it is most certainly unhelpful.

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.

Top Six Things NOT To Say To A Parent Who Suspects Their Child May Be Autistic:

Top Six Things NOT To Say To A Parent Who Suspects Their Child May Be Autistic:

In this post, we’re going to take a look at some of the key things one shouldn’t say to a parent who believes their child may be autistic. Maybe you can helpfully share the article with them? Or share our ‘What Is Autism?’ blog!

Let’s be clear – if the parent has taken the trouble to research autistic spectrum conditions, and a third party is struggling to understand and comprehend what they’re talking about, chances are that the parent is more educated than the friend or family member, at this point. So please, third party, do hear them out!

Here are our Top Six Things NOT To Say To A Parent Who Suspects Their Child May Be Autistic:

1.”He doesn’t look autistic.” (Or: “He doesn’t look like there’s something wrong with him.”)

No, that’s because autism doesn’t have a ‘look’. There’s no obvious ways to tell, strictly from how someone looks. And in any case, autism isn’t ‘wrong’!

2.”But he makes eye contact. He can’t be autistic.”

They’d better have a read of our blog on busting the myths concerning autistic people and eye contact! Autistic people CAN make eye contact, however on occasions, the autistic person may just be TOLERATING the eye contact.

3.”So what caused the autism?”

Goodness only knows! That’s a whole different conversation. Autism is a complex condition, and current thinking is that it may occur as a result of genetic predisposition (a natural tendency), as well as (external) environmental issues, and (so-far) unknown factors. But, in the opinion of this author, you can rest-assured that autism is not caused by vaccines. (Twenty epidemiologic studies have shown that neither thimerosal nor MMR vaccine causes autism.) What’s more important is how to support the autistic person through their journey of life.

4.”What’s his special skill?”

Um….. that’s a little patronising. Yes, we know that many autistic characters on TV (like the BBC’s excellent ‘The A Word’) have special skills, but not all autistic kids do, and in any case, maybe the child in question hasn’t found their niche yet?

5.”Are you sure he isn’t just naughty?”

That’s also patronising. Naughty behaviour is after all just communication, so if the child in question seems to be displaying behaviours that are deemed inappropriate by others, let’s all be grateful that we have this useful feedback with which to help the child feel more comfortable! Maybe the autistic child has been over-stimulated, or is feeling panicky? It’s unwise to bring discipline into the equation, as the parent cannot help but feel criticised.

6.”I’m sorry to hear that.” (Said with ‘Poor you’ intonation.)

There’s nothing to be sorry about. If he’s autistic, this child will just see the world differently.  Autism is a ‘pervasive developmental disorder’; a lifelong, developmental condition that affects how a person communicates with and relates to other people. Support is welcome, but pity, not!

(NB – This isn’t a real numbered tip in our list. Just a tip: To anyone whose friend or family member has divulged that they believe their child may be on the autistic spectrum. Please don’t ever consider getting them an ‘Autism Mom’ or Autism Warrior’ T Shirt. Our article HERE explains why!)

So, if these are the things NOT to say, what SHOULD someone say if their friend or family member has disclosed that they believe their child may be on the autistic spectrum?

Violet Fenn, writing for the UK’s Metro, has these tips:

“I don’t understand autism, can you tell me more?”

“Are you okay?”

“Can I help right now?”

“How are you?” (Directed at the child).

“Would your son/daughter like to come?” (E.g. to an event or party).

We hope this article has been useful! 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.

PS – We can recommend this book as a useful guide for friends and family members – Jude Welton’s “Can I Tell You about Autism?: A Guide for Friends, Family and Professionals’ – see the link below.

The A Word – a BBC drama about family life, tactfully written – oh yes, and a lead character happens to be autistic (ASD/ASC/Autism)

The A Word – a BBC drama about family life, tactfully written – oh yes, and a lead character happens to be autistic (ASD/ASC/Autism)

I have been compelled to mention BBC TV’s excellent ‘The A Word‘ TV programme on Spectra.blog, in case anyone who’s considering watching it has been put off for some reason, and needs a little push to watch it on Catch Up, or on BBC TV.

Created by Peter Bowker, the drama series is now in its second series in the UK. I hadn’t watched it or wanted to watch it, as I’d read some reviews and viewpoints from the autism community that put me off. I was expecting a tawdry soap-type-drama that used autism as some kind of crutch, made by people with no clue about what having an autism spectrum condition (ASC) meant, or what parenting someone on the autistic spectrum involved. However, Peter Bowker, described by Radio Times as a former special needs teacher, has created a masterpiece.

Tact and skill

The BBC’s The A Word. (Credit: BBC)

Writing in the UK’s Telegraph, Benji Wilson hits the nail right on the head. “Bowker’s approach [is] to keep things light. It requires writing of great tact and a lot of skill to do so.” (It’s also worth praising lead director Sue Tully, better known to many as Susan Tully as an actress in BBC TV dramas.)

Actor Christopher Ecclestone, surely the comedic lynchpin character in The A Word, told the UK’s Daily Mail that fans of the show often stop him with praise. “People say, “Thank you for making it, because my son, my daughter, my grandson, a friend of a friend has someone on the spectrum.” They say thank you for making it positive and funny. [The A Word] is not a soapbox piece; it’s actually about the positivity that [the main character, a seven year old autistic boy] Joe’s condition brings, and how families rally round and have to look at their own behaviour.’

In series one, Joe’s mother Alison is depicted as being quite manipulative and, dare we say it, unpleasant, but in series two (set two years later), she’s mellowed and become more empathetic. Interviewed in the same article, actress Morven Christie said: “Alison is in such a different place in this series. She’s still a bull in a china shop but she’s not afraid any more. It’s important that in telling stories like this you don’t shy away from things that are ugly or clumsy.”

Lee Ingleby, who plays Joe’s Dad in The A Word, sums up the series’ success in the article, when he says: “The A Word… is just about a family – about love, loss and communication.”

Although some critics of the first series rightly pointed out that the process of autism diagnosis for the character of Joe was wildly inaccurate, suspending our belief for a while, what is important to take on board is the quality of the drama, and the tactful, funny writing. The A Word is a drama about families, and one of the main characters just happens to have autism. The acting is first class, and there are many, many tender and funny moments throughout.

Of course, Joe doesn’t represent autism, or represent a typical autistic boy – all autistics are different, the condition being a spectrum, so we are just seeing one boy and one family. Do all autistic children have Joe’s special gifts for memorising song lyrics? No. Are all children on the spectrum at a similar level of functioning as Joe? No.

But, whether you’ve an interest in autism or not, it is worthwhile watching The A World if you can, especially if you’re able to catch series one, which creates the back-story. It is wonderful to see autism being represented accurately and sympathetically, and the programme really is a joy to watch. Visit the BBC site for info.

Myth-busting: Explaining eye contact for children & adults with autism (ASD/ASC/PDA/autism spectrum)

Myth-busting: Explaining eye contact for children & adults with autism (ASD/ASC/PDA/autism spectrum)

It seems pertinent to write an entire blog post on the subject of eye contact and autistic people; it is often one of the first things that is referenced, with regard to whether someone is autistic, even by supposed experts and autism clinicians. You will sometimes hear some (ill-informed) people say: “So and so doesn’t look very autistic, because they make eye contact…”

Eye contact is used the world over as a way to initiate, terminate or regulate social interaction. It is absolutely true to say that people on the autistic spectrum struggle at varying degrees to make eye contact. (Very often, they will also have problems being videoed or photographed).

Some pointers:

1.Autistic people CAN make eye contact. If they DO, don’t assume they’re NOT autistic!

2.However, on occasions, the autistic person may just be TOLERATING the eye contact.

Observe the autistic person, and there is every chance that if they are making eye contact, then it is just when they are comfortable with it at the minimum level required. What is uncomfortable for someone on the autistic spectrum is enforced eye contact, and if that situation happens to be at a stressful time, for example a job interview or one-to-one with a teacher, when the autistic child or adult might feel judged, then their stress responses will be coming into play already. As stress levels increase (or other negative emotions connected with the person they’re supposed to be looking at!), the ability of the person with autism to comfortably hold eye contact reduces.

At stressful times, making eye contact will be harder for the child or adult on the autistic spectrum. We can simplify the issue by saying that in non-stressful situations, many autistic people are able to hold eye contact, but it doesn’t mean that they are very accomplished at it, or very comfortable with it; just that they have learned that it’s expected, and that they can certainly do it when there is a real need to! However, it may be a kind of mask, e.g the autistic person is acting in a neurotypical way, because they know it is expected.

However, if shutdown is imminent, e.g. if an autistic person is feeling stressed or threatened, or if there is any underlying issue with the person that they’re supposed to be making eye contact with, e.g. a conflict or argument or an area of mistrust, then without question, the autistic person will find it difficult to look them in the eye. Also, you can sometimes look more closely at the autistic person’s eye contact, and a lot of the time, you may find that they are not making direct contact with the eyes, but perhaps just below the eyes, for example ‘nose’ contact, or above the eyes, e.g. ‘eyebrow’ contact! (Which is a great compromise for all concerned, in our book)! Essentially, extended eye contact is part of a set of learned skill-sets that the autistic person feels they need (or is told they need) in order to appear neurotypical or ‘normal’!

So, please don’t focus on eye contact being a definitive assessment of whether a person has autism or not – autistic people can and do make eye contact, but it is invariably hard for them, and their ability to do so could be an indicator of their discomfort or stress levels. (Here at Spectra.Blog we are certainly against any ‘compliance’-based training or so-called therapy that enforces eye contact for an autistic person.)

The science bit

Interestingly, a recent feature on ScientistAlert sourcing a study from the journal ‘Nature Scientific Reports’ states that: “Researchers have discovered a part of the brain responsible for helping newborns turn towards familiar faces is abnormally activated among those on the autism spectrum, suggesting therapies that force eye contact could inadvertently be inducing anxiety.”

Study researchers concluded that avoiding eye contact as an autistic person: “Is a way to decrease an unpleasant excessive arousal, stemming from over-activation in a particular part of the brain.” [The subcortical system].

It is also of value to think about WHY the eye contact is taking place, e.g. why an autistic person would tolerate something that’s uncomfortable for them – neurotypical people use eye contact to share ‘socioemotional’ messages. However, even when the autistic person IS making eye contact, it is probably more for function, and to gain information (or meet an expectation), rather than to share an emotional ‘moment’.

In an autism assessment, the assessor will take eye contact into account, but (if they’re experienced as a clinician), will take it into account as a broader part of the overall picture, and will also note how the person being assessed uses their non verbal gestures as well.

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.

What autistic traits are you born with? (Looking at Neuroscience and autism / Asperger’s / PDA)

What autistic traits are you born with? (Looking at Neuroscience and autism / Asperger’s / PDA)

So… what autistic traits are we actually born with? One of the most interesting aspects of autistic spectrum conditions is the debates and discussions you can have about what you are born with (in terms of autistic traits and behaviours), and what manifests over time.

“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 links to autism with pregnancy-related factors, including gestational diabetes, maternal medication and birth injury or trauma; but research is ongoing.)

In any case: autism does not come and go like a virus – the author of this piece was (inadvisably) 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 probably a very simplistic and ill-informed view of the child’s situation – it is more likely that the child was misdiagnosed in the first place, or that his environment was managed to a degree so that his autistic traits and behaviours reduced during that period. Either way, it is a worry that a health visitor mentioned it as Truth, in passing!

Are all of your autistic traits always present from birth?

So, if you are born autistic, what does that mean – are all of your autistic traits 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, creating autistic trait 1, autistic trait 2 etc, as our neurons rapidly form connections, or synapses, within the brain? Given that some high functioning autism spectrum disorder traits are linked to a slightly more passive profile like Asperger Syndrome, and some autistic traits are more linked to the stronger or more overt characteristics of PDA or Pathological Demand Avoidance, just WHEN does the person slot into their autistic Profile? 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. As our ‘autistic’ brains develop, who’s to say what is happening, and what new patterns are forming?)

Less PDA traits?

Families of children with PDA know that when demands are reduced and the causes of anxiety are managed, the child may show less overt traits of pathological demand avoidance. 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 the panic attacks (or meltdowns).

Some clinical psychologists believe that high functioning autism conditions are ‘variable’, in that the autistic traits, signs or 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 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 traits tend to be driven and heightened by anxiety, 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 can be reduced.

So, going back to our original point at the start of this post, what autistic traits are we born with, in terms of collections of traits that are linked to a particular profile, such as Asperger Syndrome or PDA? Can the management of a child, or of ourselves if we are an adult with autism, somehow influence the profile or label of autism that we are given? Is there any way for example to almost prevent Pathological Demand Avoidance as the profile that the autistic child ends up being diagnosed with, through careful management of the triggers? (This does seem unlikely, but it is an interesting point of discussion!)

Two red herrings

(1)Interestingly, it does seem the case that many children with a demand avoidant autistic profile are initially incorrectly diagnosed with Asperger’s in any case, because the clinician has not had the exposure or experience to enable them to diagnose PDA.

“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…”

(2)And, there is also the issue that even though a child may have a brain that is autistic, many parts of the brain are functioning in a neurotypical way, and as the child matures and hopefully their environment and the triggers for anxiety are managed, 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.

Both of these red herrings could lead us to suspect that we have somehow changed our child’s autistic profile, 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.

This of course hasn’t answered our original question – which it is impossible to answer! – but we hope it 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 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.

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

Finally, 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 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).”