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NOT walking in your shadow. Tips for breaking free from negativity and autistic shutdown (ASD / ASC / Asperger’s)

NOT walking in your shadow. Tips for breaking free from negativity and autistic shutdown (ASD / ASC / Asperger’s)

This blog is really about positivity. The author has been in something of an anxious, autistic ‘fug’ for a few weeks – a shutdown. Retreating, wallowing – it’s not a bad thing, it’s not something to feel too concerned about; it’s usually a necessarily evil for an autistic individual, when life has got ‘too much’. (Although long term shutdown IS concerning). For this autist, shutdown, while not pleasant, is an important period, as it always serves as a reminder, or a wake-up call.

Essentially, shutdown, for someone with an autistic spectrum disorder / condition (ASD/ASC), can be described as feeling like a computer that’s not equipped with update software – it simply has too many apps or browsers or programs open. Autistic shutdown is when you need to start closing down your programs, to conserve energy.

(We covered the process in more detail on THIS BLOG, so please click to read more about autistic shutdown. We also covered the process of heading to shutdown in THIS BLOG, so we hope you find these useful.)

Anxiety tests

Incidentally, performing regular anxiety tests can be a useful indicator for an autistic person, in terms of whether they’re heading for shutdown. THIS SITE offers a good stress/depression/anxiety test, assessing elements like whether the individual is unable to relax, is ‘touchy’ and easily upset, irritable, easily startled, fidgety, intolerant of interruption etc. It’s a quick, confidential online Q&A that gives good feedback, and doing a test like this regularly is a good gauge (for anyone – autist or neurotypical!), to assess their mental state.

ANYWAY. As mentioned, this post is about positivity, and moving forward from the low times.

What gets an individual on the autistic spectrum out of shutdown?

(1)Removal of the stressor, of cause of the anxiety.

(Fine in theory – but for most people, autist or neurotypical, anxiety has many causative factors – it’s hard to pinpoint individual elements, let alone remove or adapt them). However sometimes, maybe working too many hours, a toxic personal or work relationship, a health issue etc, can be addressed, and the stressor can be removed or reduced.

(2)Self-care

This point is important. Relaxation, reduction of sensory or social challenges, as much sleep as is possible, indulgence in one’s interests (e.g. music), down-time / me-time, etc. Self-care (at all times, e.g. not just when in shutdown) is key to maintain emotional equilibrium for all autists, and anyone, in fact.

(3)Talking therapies, mindfulness, meditation etc

Many people, again autist or neurotypical, benefit from talking therapies like Cognitive Behavioural Therapy (CBT), to help re-set negative thought patterns. (Those on the autistic spectrum are especially prone to repetitive thought patterns.) Mindfulness, meditation and such holistic practices may also help.

(4)Time

Sometimes, time just helps. Our autistic PC simply has too many apps or browsers or programs open, so just working through the re-booting process is beneficial.

(5) Life cull

As mentioned, this post is about positivity, and this author saw a phrase recently which helped enormously: Let go of what does not serve you.

This ‘life cull’ applies to things, possessions, places, hobbies and people. Individuals on the autistic spectrum can get overwhelmed easily by socialisation and sensory sensitivity, and we’re often ‘people pleasers’ (especially, it seems, autistic females – something author Tania Marshall has described.) Sometimes we need to ‘let go’ of things in our lives, to maintain wellness.

This explanation is from the website Peaceful Mind, Peaceful Life

“One of the hardest yet most rewarding lessons I’ve experienced is learning to let go of what doesn’t serve me. In theory, I’ve always understood it, but in my ego mind, I’ve always thought that it is me who knows what’s best for me. So, when the Universe would send me messages to step away from certain people, situations or places, and I just wasn’t ready to, I ignored it, sending me into constant tailspin. I let go of people who brought me down, of places that made me feel low, of habits that didn’t bring forward my best self, and it was really freaking challenging.”

So, number 5 on our list is ‘life cull’. If you’re an autist (or your loved one is) struggling to recalibrate, reinvigorate or get out of a shutdown or ‘low’ period: why not make some changes?

Step away from people, situations or places that do not serve you. It can be hard, especially letting go of routines and relationships / friendships – but: are they serving you?

Don’t forget to read our AUTISTIC SHUTDOWN BLOG!

Music that moves you

Something that helps this author is finding moving music; music that changes our state. A new song by a UK songwriter really ignited the fire, recently: Barbed Wire by Tom Grennan, with the lyrics –

‘From a youthless man who’s walked a lonely road… he holds himself together with these barbed wire gates. Don’t let people hold you back; gotta stand tall and aim higher; don’t touch the barbed wire. If you walk in your shadow, led by shepherds, then you know.’

The songwriter has said Barbed Wire as a concept is the idea of a path you shouldn’t tread, and was written when he felt trapped and isolated.

Although it was written from that sad place, it is very euphoric and brilliantly produced, best turned up loud. It certainly lifted this author up!

There’s something to be said about NOT walking in your shadow, and not letting people hold you back. In a low spot, a ‘fug’ or an autistic shutdown, finding the spark that changes your thought processes is key to getting out of the shadows. Listen to the track far below, and also see our own video to accompany this blog.

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

Recent Posts

(3) #mygrandchildisautistic?! Why is routine so important to the autistic child? Why do autistic children struggle at occasions / parties? We answer grandparents’ questions on autism

(3) #mygrandchildisautistic?! Why is routine so important to the autistic child? Why do autistic children struggle at occasions / parties? We answer grandparents’ questions on autism

This is the third 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 is routine so important to the autistic child?

The autistic brain can feel ‘dis-ordered’ – hence the diagnostic term ‘autism spectrum disorder’ – and this element of disorder changes day to day and occasion to occasion, and also environment to environment, for the autist. (Read our ‘What is autism’ blog HERE).

With life’s multiple elements of unpredictability, many autists find solace in structure. Each autist is different of course, with a different set of challenges, however all autistic individuals will face challenges in the fields of communication and social interaction, as well as some degree of sensory difficulty. It is when the difficulties or challenges stack up, and are not counter-acted by skill-sets to manage them, that autistic anxiety ramps up; and autistic behaviours that are problematic for the autist, and sometimes others around them, manifest. (This is why we use a set of scales in our Spectra.blog logo, e.g. to represent this ‘balance’ of challenges versus skill-sets).

Following routine means that the autist is limiting surprises, unexpected sensory challenges, or new social situations. Depending on their level of processing challenges and executive functioning difficulties, un-planned-for occurrences can de-rail the autist’s day. What most autistic individuals like, is to know what is happening, and when. Grandparents and care-givers can help this autonomy and synergy by keeping to set routines, bedtimes, nap times, meal-times, and even meal-types. Autists often experience sensory challenges that make meal-times tricky, in terms of aversions to textures and tastes of food. Sticking to plans, which may include shopping ahead for preferred brands of food for example, so they’re ‘in the cupboard’, helps keep the autist in control. It’s worth mentioning on the subject of food that many autistic children have food intolerances, stress-related digestive disturbances, or are sensitive to food additives, E-numbers and the like. Sticking to the parents’ rules about sweets and snacks will also help maintain mental and physical equilibrium for 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?

Tiredness certainly affects us all, no matter what our age! But let’s use a scenario… imagine going to a networking meeting (or family wedding, for example), in a foreign country, with people, many of whom you like very much, who are speaking a language you don’t know well. You have perhaps learned some key phrases, and have a guidebook (or digital app/translation device). But often, when you’re conversing, despite the occasion being fun, you miss what’s been said, a quickly-told joke goes over your head, or you spend so long looking up a translation that you forget what the other person’s intention was. By the end of the occasion, your brain has worked far harder than usual.

This is what EVERY conversation may be like for an autistic child. They are not just conversing – they’re processing, and trying to navigate social rules and body language that confuse them too. Plus, at an occasion or party, there’s very likely to be background music or chatter thrown into the sensory melting pot. This can result in a ‘social hangover’, whereby the autist NEEDS downtime from all conversation and interaction (and probably sensory stimulation) until they recover. (Otherwise autistic shutdown may ensue.)

Every further conversation and interaction once their ‘social bandwidth’ has been used up is exhausting the autist further. So, parties, visits from relatives, play-dates, Christmas (or any other religious or seasonal occasion) meals and gatherings, and anything that’s socially taxing, especially with people the autist doesn’t see frequently, whilst fun, can be catastrophically draining. It’s nothing like simply being tired. Grandparents and caregivers can help by factoring in lots of downtime, quiet periods, possibly ‘screen time’ if this is what the parents agree with, and any sensory tools that help reduce anxiety, like a weighted blanket or set of noise-cancelling earphones. (It’s worth mentioning also that many autistic children are not fans of being videoed or photographed, so families should ideally ask the child first, before filming or snapping away!)

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

*Why does he / she need a label?
*All children his / her age do (certain autistic behaviours) – it doesn’t make them autistic…that’s normal isn’t it?
*It seems like the parents of the child let them dictate a lot, in terms of washing, bathing, food choices, and the clothes they wear. Why is this?

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?
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. 

(2) #mygrandchildisautistic?! – how families and grandparents can support the parents of a newly diagnosed autistic child, & the child themselves (inc: autistic meltdown)

(2) #mygrandchildisautistic?! – how families and grandparents can support the parents of a newly diagnosed autistic child, & the child themselves (inc: autistic meltdown)

This is the second 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.

Surely behaviours like meltdowns are just like tantrums – how can we tell them apart?

Firstly, if you haven’t already, do read our ‘What is autism’ blog HERE, for some background info. To answer the above question – autistic meltdowns and tantrums certainly have similarities! Tantrums tend to be based on a want or need, and are likely to last until the want or need is met. The Royal College of Psychiatrists describes tantrums as – ‘Usually a short period of angry outburst or unreasonable behaviours like crying, screaming, shouting and throwing objects. Tantrums are a normal part of growing up. Between the ages of one and four years, most children will have tantrums. A battle between freedom and frustration can lead to tantrums.’

The National Autistic Society (NAS) describes autistic meltdowns as: ‘An intense response to an overwhelming situation. It happens when someone becomes completely overwhelmed by their current situation and temporarily loses behavioural control.’

Autistic meltdowns may be compared to a panic attack. There’s less of an element of control, and if one looks closely at the child, one can generally see more despair and anxiety in their face than the pure frustration usually seen in tantrums. Dealing with tantrums differs with each family/parent, but anecdotally, they can sometimes be resolved by ignoring or (safely) leaving the child, and removing the ‘audience’. The child may recover quickly and may be able to discuss what occurred fairly quickly too.

Meltdowns differ usually, in that the last thing the autistic child may need at this time is abandonment. Equally, they need to work through it – requests to ‘get over it’, ‘stop crying’ etc are unhelpful. Many parents advise keeping the child (and others in the vicinity) safe, letting them know the parent or care-giver is close by, and then letting the meltdown take its course. The time to talk about what just occurred may not be straight after the meltdown; some children need more processing time. The NAS has advice on noticing meltdown triggers and working through autistic meltdowns HERE. Grandparents can work with the child’s parents to identify meltdown triggers, and keep interactions and activities low-key and ‘low demand’, if the child seems particularly anxious. Reducing ‘required’ eye contact may also help.

Keeping a close eye on routines (e.g. has the child kept his/her regular nap or bed time, for example?); sensory elements (has he/she been recently exposed to excessive socialisation with bright lights and loud sounds?); and any communication challenges (for example, using visual supports and keeping a chart or diary with images of planned activities can help reduce communicative stress in autistic children), could prove useful.

If the school and the wider family don’t see any autistic behaviours in the child, how can he / she be autistic?

It isn’t uncommon for autistic children to let their guard down (after school) when at home in their safe place with their parents and immediate family, and let their autistic behaviours ‘out’. Some children with ASC ‘mask’ their autism at school, intentionally or otherwise. (Is it really that different to an adult with anxiety, who feels somehow out of place (e.g. ‘imposter syndrome’) putting on a ‘work face’ and a work suit in the workplace? Many employees try to create a good impression, or try to impress peers/employers, and lots of us act differently when we are with different groups of people, trying to present the best version of ourselves.) Autistic people often ‘mask’ their limitations when in company, which can be exhausting.

So, the child that ‘masks’ may hold it together at school, then let their anxieties and emotions out at home, when they feel that it is safe to do so. A further aspect is that high functioning autism signs can be subtle, and many educators have simply not had the exposure to many children with ASCs. Just because they are teachers (or TAs), doesn’t mean they will recognise the sometimes subtle signs of autism seen in a child who is masking. Grandparents and care-givers can work with the parents to find out when the autistic child tends to be most anxious, and when they need space to ‘recalibrate’ and unwind. (Maybe there’s a particular post-school, low-key activity that the grandparent can do with the child, that is quiet and low-stress, such as rock painting or crafting? Generally, activities that are socially-led can ‘add’ to the demands and anxiety placed on the child at school in a given day, even if the activity appears to be fun.)

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

*Why does he / she need a label?
*What’s causing this current epidemic of autism diagnoses?
*All children his / her age do (certain autistic behaviours) – it doesn’t make them autistic… that’s normal isn’t it?
*It seems like the parents of the child let them dictate a lot, in terms of washing, bathing, food choices, and the clothes they wear. Why is this?

Please also visit the 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. 

(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.