by admin | Apr 29, 2019 | News & Views
It is still surprising how often one sees the autism puzzle piece. It’s a contentious issue in the field of autism – the puzzle piece is used as a logo to promote autism products, charities, entities and awareness events.
Conceived in 1963 by Gerald Gasson, a parent and board member for the National Autistic Society (or NAS, formerly The Society for Autistic Children), the puzzle was used as the board reportedly believed that autistic people suffered from a ‘puzzling’ condition. The NAS no longer uses it.
Many individuals nowadays object to the puzzle piece’s use in autism awareness campaigns; public opinion is fairly divided, however.
Here’s our view. The people opposing the jigsaw puzzle piece find it patronising, as if autistic individuals are part of a big puzzle that needs to be fixed. it also has connotations with an American organisation who arguably have done very little for autism acceptance.
“Bright, primary colours are hardly conducive to people with sensory challenges…”
Further criticisms about the jigsaw puzzle logo are that it is invariably shown in bright primary colours, thus linking it to children, when autism is in fact a neurology of people of all ages. Furthermore, bright, primary colours are hardly conducive to people with sensory challenges!
On the other hand, there are there many people who really don’t have an opinion about the puzzle piece one way or another, or even quite like its depiction of a puzzle. Some people would argue that autism is indeed puzzling, and that the puzzle pieces represent the concept of fitting together or fitting in.
Although (judging by discussions on social media, at least), opinion does seem fairly evenly split (perhaps down to a lack of education as to WHY objectors are offended by the logo!), to generalise, it seems that most objectors to the puzzle piece are autistic adults, while those less offended are parents of autistic children, or those working in the field of autism who aren’t autistic themselves.
To infinity…
But in this enlightened time, it does seem sensible to move onto a more widely excepted logo with less historically negative links; for example the infinity logo, which represents diversity, and is much more widely preferred.
Positive steps
Recently, some autumn organisations have changed their marketing materials as a direct result of autistic individuals enlightening them as to why the puzzle pieces used may cause offence; a very positive step!
(Also, don’t take our word for it – a study titled: ‘Do puzzle pieces and autism puzzle piece logos evoke negative associations?’ which researched public perception and was published in the journal ‘Autism’ (Autism: 2018 Feb; 22(2): 118–125.) stated: ‘If an autism organization’s intention for using puzzle-piece imagery is to evoke negative associations, then the use of puzzle-piece imagery is apt. If, instead, an autism organization’s intention for using puzzle-piece imagery is not meant to devalue autistic persons, but, quite the opposite, to celebrate [autistic persons], our results suggest that puzzle-piece imagery should probably be avoided.’)
Light it up…….
Along the same lines as our observations about the puzzle piece, it is worth noting here that many autistic individuals are not fans of the ‘light it up blue’ campaigns that arise each spring, around the time of autism awareness month. Various buildings, normally backlit with plain lights, have blue filters added at the time of the campaign, as some kind of ‘tribute to’, or ‘to promote awareness of’ autism.
The origins of the concept lie with the same aforementioned American organisation that has arguably done little to promote autism acceptance.
The majority of autistic individuals (seemingly especially in the UK), who know of its origins, do NOT support the LIUB campaign, with many successfully asking project organisers who adopt the ‘light it up blue’ concept to change the filter colours, to support the neurodiversity movement.
Awareness campaigns don’t generally educate anyone about autism
In conclusion, what #actuallyautistic advocates and many families of autists crave is acceptance. All of the ‘awareness’ elements like dated puzzle piece logos and campaigns like ‘light it up blue’ do, is enhance awareness that autism exists. They don’t generally educate anyone about autism and acceptance of neurodiversity. They’re sometimes accompanied with stories of parents ‘bravely revealing’ their child is autistic, or tales of an individual ‘suffering with autism’; e.g. unhelpful language that does nothing for true awareness of the fact that autism is a lifelong processing difference.
Incidentally, the way we are exposed to autism isn’t helped by the lack of really positive influencers in the media and on social media. We will all come into contact with hundreds of autists in our lifetime; autistic individuals are represented by our families, our children’s teachers, our work colleagues, etc. Everyday autistic people getting on with their lives.
A step forward for the autism community
However, in the media, references to autism are more commonly the aforementioned ‘celeb’ who ‘bravely’ discusses their autistic family member. (Not that we believe that this exposure and ambassadorship is intrinsically a bad thing; of course it isn’t – however, it is the negative language used, usually by presenters or journalists, that sometimes irks.).
(Of course, there are SOME excellent advocates and influencers around – very many #actuallyautistic bloggers, and also a select number of high profile media people – see our ‘influencer feature’ below, which includes the fabulous Greta Thunberg…)
Autistic influencers – celebrating high-profile individuals forging a positive path to raise awareness and boost education about autism (Asperger’s / ASC / ASD)
BUT, more well-informed presenters and journalists, more #actuallyautustic advocates in the spotlight, (especially on TV), and more education all-round, in terms of acceptable ‘awareness’ campaigns and marketing assets, would definitely be a step forward for the autism community.
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. We’d also love your feedback on our posts!
by admin | Apr 29, 2019 | News & Views
One can’t have failed to have noticed the awareness surrounding young climate activist Greta Thunberg, recently.
The sixteen year old Swede and Nobel Peace Prize nominee has been thrust into the limelight over the last few months, since she initiated a weekly school strike to protest about the lack of Government action to address issues surrounding global climate change.
Greta is autistic, and is probably the most famous advocate for autism that the community has ever seen. She’s been on national TV news broadcasts, and in national newspaper articles and at TED Talks, and doesn’t shy away from talking about her Asperger’s diagnosis.
What’s fascinating is that autism is clearly a driving force behind her passion for redressing climate change. Greta Thunberg reportedly suffered from depression and issues with eating (not divulged by Greta as an eating disorder, but linked to her depression), aged eleven, in what seems to represent a classic example of autistic burnout. She stopped (for the most part) eating and talking, but then turned her life around. Turning her despair over the environment to action, she encouraged her family to support various changes to reduce their carbon footprint, and started making a stand.
Asked for an interview in DPA International about how her autism affects her work for the climate, Greta states: “Very positively. I’ve begun to realize that I can focus a lot more than most. But I can also get extremely tired when I run out of energy. If I hadn’t had Asperger’s, I’d have sought other routes.
Now I don’t do too well in groups, and work a lot more on my own than many other activists who want to start organizations and write charters and rules. That’s why #FridaysForFuture is a hashtag and a movement that puts the focus on research. “
Greta Thunberg doesn’t look like most teenagers on TV
What’s striking about Greta Thunberg, and is a big part of her media appeal, is that although she is sixteen, she looks much younger. Again, this is perhaps linked to her autism. Her hair in sensory friendly pigtails, wearing practical, comfy clothes, with no hint of make up or the interest to wear any, Greta doesn’t look like most teenagers on TV.
Her slim frame and short stature, attributed to her stunted growth at the time of her depressive episode, add to the childlike appearance; although her oratory is incredibly mature.
Some commentators, perhaps not knowing about her autism (or caring), have noted her ‘passive’ expression, and often deadpan delivery.
But this is a young woman who, as a Swede, is speaking in a second language. And Greta’s autism will affect her facial expressions and delivery, with ‘Aspies’ commonly lacking the facial expressions and reciprocal movements of their neurotypical peers, and often talking with a monotone type voice.
Autists are famed for their black and white thinking styles, obsessive interests, straight, truthful talking, and a sense of justice; there’s surely no better example of these traits than with Greta Thunberg.
She’s an inspiration to so many people and a great ambassador for the #actuallyautistic community.
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. We’d also love your feedback on our posts!
Read more about autistic influencers…
Autistic influencers – celebrating high-profile individuals forging a positive path to raise awareness and boost education about autism (Asperger’s / ASC / ASD)
by admin | Apr 20, 2019 | News & Views
Meltdown describes the situation where the individual – autistic or otherwise, as it is not only a term used for neurodiversity – is no longer able to cope. Their skillsets aren’t sufficiently honed to deal with the situation at that time, and the individual lets off steam one way or another, in order to recalibrate. (Skillsets may include social and language skills, as well as executive functioning skills, as examples).
Autistic meltdowns differ from person to person, and some autistic individuals, especially adults, say that they rarely have meltdowns. (They will undoubtedly experience challenges and periods of ‘overwhelm’, but perhaps they head straight to shutdown, or some kind of low mood, or withdrawal).
Read more on autistic shutdown here.
Meltdowns – panic attacks and neural high jacking
Meltdowns can sometimes be defined as panic attacks; they may look like tantrums; sometimes they can just be bursts of anger or frustration, and they can manifest as tears or extreme sadness. They may be over extremely quickly once the individual has let off steam, or they may last for a much longer duration.
On some occasions, a meltdown is extremely serious, as the individual or people in close proximity may be at risk, e.g. from violent or erratic behaviour.
Some experts describe meltdowns as ‘neural high jacking’, when coherent, rational thought is absent, and what is left is a debilitated state of incoherence.
According to psychologist Dr. Daniel Goleman, what the child does and says during meltdown is simply ‘mental debris’.
Bring on the autistic meltdown!
Sometimes (as an outsider), one can see a meltdown coming, in an autist; and in fact a teacher or carer may even want to want the meltdown to occur, simply so the child can recalibrate, and get the outpouring over and done with in a safe and supportive space.
The teacher may for example spot signs in the classroom, such as the child being easily upset, ‘spoiling for a fight’ or picking an argument, having a lot of nervous energy, or generally becoming withdrawn. There could be specific rituals or behaviours that the child is doing ahead of the meltdown. Maybe for example an anxiety-related stim like clenching and releasing the teeth, or clicking their fingers, or the child may have the self-awareness to realise a meltdown is imminent, and recognise triggers. (As do many adults).
Triggers for autistic meltdown
The meltdown triggers themselves are many and varied; they obviously vary depending on the individual and are usually multifactorial. Elements like sensory overload from sources like lights and noise may play a part (clinicians may describe this as ‘sensory integration dysfunction’); as well as excessive demands (or things that are perceived to be demands by the autistic individual). Excessive socialisation, known stressful situations, and anything that triggers the autist’s quirks or ‘peccadillos’ (e.g. maybe a favourite food has run out, or a play date has been cancelled), can contribute to meltdowns.
Masking
It is often said that masking is a factor too; masking or trying to appear ‘typical’ can be very energy depleting. Whether it is trying to fit in at school, attempting to follow social conversations in a group, or blending in with neurotypical colleagues in the workplace, the act of masking one’s autism drains emotional energy, or conceptual ‘mental bandwidth’. A build up of masking, combined with general tiredness and a specific trigger, however minor it is perceived to be, can easily trigger autistic meltdowns.
Therefore, some or all of the triggers described above (as well as others not listed, but relative to the individual) can initiate meltdown. Other everyday factors like tiredness and hunger, as well as hormones, can also play a part. Often, the concept of ‘the straw that broke the camel’s back’ can take place, e.g. something that seems innocuous and not worthy of such a level of upset can tip one over the emotional edge – the proverbial last straw.
Melting down at home, not school
It is not uncommon for autistic children at school to meltdown at home, after a day of blending in, and masking at school – invariably, they are melting down in their safe place, even though the anxiety was building all day. This can lead parents’ concerns about the possibility of an autism diagnosis for their child to be questioned, as those who do not understand the challenges presented by autism may assume the cause of the meltdown is occurring ‘at home’. In such instances, viewpoints like: ‘Well, she seems fine at school’, or ‘Maybe he’s picking up on the parents’ anxiety at home,’ are rarely helpful.
The main challenges presented by autism – difficulties communicating and socialising, sensory challenges (e.g. to noise and light, for example), and specific thinking styles or rigid thought processes that aren’t supported by the learning style at the school – can all cause great anxiety to a child. It’s no wonder that after a day of using up all of their ‘spoons‘, many autistic kids come home and feel comfortable enough to let their frustrations and emotions out. (NB – the reference to spoons relates to the spoon theory, a kind of disability metaphor developed by Christine Miserandino, who has lupus, and uses ‘spoons’ to explain how to ration one’s energy. Read more about the spoon theory here.)
What happens during meltdown, or ‘cognitive debilitation’?
Different individuals react differently – some may meltdown in the more obvious sense, e.g. excessive stimming, tears, anger, arguments and even out-of-control aggression, while others may consciously try to make their meltdown more low key, and private. (The latter is a big concern, as self-harming could be an issue).
For the loved one, educator or carer of an autist, the key to coping with meltdowns is often to get a handle on what triggers that individual, to help reduce factors that are likely to trigger the meltdown. Once it has started, it really needs to run its course – it is, after all, a release, a situation of overwhelm, or a kind of panic attack.
Naturally, it is best not to judge or be cross about the meltdown. Sometimes the individual may appreciate someone being close to them (e.g. in the room, or outside the door); other times, they may need or prefer to be left alone, to work through the process. Autism Parenting Magazine suggests using calming devices like a fidget toy, noise-canceling headphones, or a weighted vest, if appropriate for the individual.
When can we chat?
Once the autist has calmed down (and when they’re ready, which may even be the next day), the family member, carer or educator may find the opportunity to talk about what happened, what triggered the episode, and how everyone handled it. Generally, autists in meltdown mode are unable to discuss anything properly at the time, as their emotional bandwidth is busy trying to recalibrate, and manage their ‘fight or flight’ response. Directly afterwards, they may feel too exhausted to talk. (NB – some families do have to cope with very aggressive and even dangerous meltdowns, and at these times, keeping all individuals safe is the priority. See ‘Interventions for meltdowns’, below.)
The Explosive Child
Dr. Ross Greene has studied and written extensively about what he describes as the ‘inflexible-explosive child’, and has written a book titled: The Explosive Child (HarperCollins), full of fascinating facts and tips.
Rebecca Law, American advocate for autistic children and their families, states in her paper (based on Dr. Green’s concepts): ‘Thoughtful response to agitation, escalation and meltdowns In children with autism spectrum disorders’:
‘Inflexible and explosive children have difficulty managing and controlling emotions associated with frustration. They also have difficulty thinking through ways of resolving frustrating situations. In these children, frustration (usually caused by a demand to ‘shift gears’) often leads to a state of ‘cognitive debilitation’.’
Her paper, based on Dr. Ross Greene’s work, details useful de-escalation techniques, including the tip to offer words that describe the mounting feelings. (E.g. “I know you are really mad that it is time to go! It is hard to stop playing with that toy. I understand.”) Green and Law also advocate framing requests (e.g. from the parent or educator to the child) as either A, B or C requests, with A being vital and non-negotiable (e.g. taking crucial medication), and C being not terribly important (e.g wearing a warm hat).
Law also includes this invaluable gem, which is aimed at the person who is addressing the autistic child who is in meltdown: ‘You need to stop talking, unless your words have a soothing effect [on the autistic individual].’.
Marvellous movement
Many families of autistic individuals, and autists themselves, say that using movement often helps disperse feelings associated with meltdown. Therefore, having a trampoline to ‘bounce out’ feelings can help, as can activities linked to pressure (e.g. pressing one’s hands against a wall, lying heavily over a Swiss ball, or lying under a weighted blanket, as examples.)
Interventions for meltdowns
A word on interventions for meltdowns – it may be useful, in more relaxed situations, to discuss with the autist their preferences for how their families or their educators ‘deal’ with future meltdowns. Sometimes physical interventions may be required to retain safety, e.g. if more modest de-escalation techniques haven’t worked – these interventions would be classed as restricting an individual’s movement, liberty or freedom to act independently. The National Autistic Society (NAS) states that almost everyone who is autistic has the ability to express a view on how they’d like to be treated, so consent for potential restraining actions should ideally be sought.
(NICE, the National Institute for Health & Care Excellence, advises – ‘Restrictive interventions should only be used if all attempts to diffuse the situation have failed, and the individual becomes aggressive or violent. if possible, an individual who is the same sex as the individual [that requires restraint] should carry out the restraint.’
Noticing triggers for autistic meltdown
Finally, it’s worth as an autistic individual trying to work out one’s own triggers for meltdown – especially if it involves the more private meltdown, that could include self harm (which could in turn include self medicating with alcohol, for example, or controlling food intake.) Having the self awareness to see when one is out of ‘spoons‘, is feeling anxious, and could be triggered into meltdown, is a very valuable skillset to have!
Keeping items to hand that would be useful if one’s trying to manage feelings connected to meltdown (maybe beloved soft toys, weighted blankets, headphones and preferred music, etc) is also a useful way to manage the feelings – as is retreating to a safe place to mentally recalibrate, away from triggers and sensory challenges.
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. We’d also love your feedback on our posts!