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(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) as autistic 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 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’ (which we acknowledge that many neurodiversity advocates do not like to use) – 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; the information we post here is based purely on our own exposure and experiences. 

 

(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 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 autistic children ‘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 autistic children. 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; the information we post here is based purely on our own exposure and experiences. 

(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 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 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 offers 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 so-called 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 autism 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 autism 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 autism. (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 the information we post here is based purely on our own exposure and experiences. 

Autism rights and legislation (UK)

Autism rights and legislation (UK)

This article is extracted from the author’s forthcoming book ‘Autism from A-Z’, and looks at the legislation concerning autism – for anyone hoping to access support for themselves or their families, it is important to familiarise oneself with it. Please note that the National Autistic Society (NAS) has extensive information at the website: www.autism.org.uk under the heading ‘Accessing Adult Social Care – England’, detailing how autists can access a needs assessment by social services, and what support is available.

There is legislative framework in place to protect autistic people – in the UK, this legislation includes:

Children playing - for autism article on spectra.blog*The Children Act 2004 – its main principles revolve around promoting safety and child protection. The Act covers local authorities and professionals that work with minors, and also covers the roles of parents and guardians and the UK courts, in terms of how to protect minors. This would include safeguarding and protecting local children, assessing their needs and promoting their upbringing by families (if safe to do so). The Act also details supervision orders, emergency protection, provision of accommodation to suitably vulnerable or abandoned minors, as well as so-called disabled children, or those with so-called special needs.

*The Children and Young person’s Act 2008 – this extends the existing framework in England & Wales in terms of appropriate care for minors, and includes overseeing care placements and educational settings for ‘in care’ minors.

*The Education Act 2002 – this ensures that school governing bodies, local education authorities and educators have consistent arrangements to safeguard children.

*The Children and Families Act 2014 – this aims to ensure increased protection for vulnerable minors, including ‘in care’ children, and those with ‘additional needs’. It places obligations on local authorities to produce legally binding Educational & Health Care Plans (EHCPs) for minors with such needs. EHCPs aim to make sure needs are met continually, and teachers and parents may request this. Local authorities (with health and social care commissioners) will have their own Autism Health Care Pathways, which generally include these elements (possibly with differing terminology): Local Offer (where a lead professional is selected), Team Around the Family (where an assessment need is considered, e.g. an autism assessment), Referral, and then Integrated Assessment, My Plan (including the setting’s allowance of budgets), followed by My Life and My Review, e.g. goals and reviews for the individual. The aim of the process is to establish support needs, and then plan for outcomes, via a multi-agency system.

Grandparent with an autistic child (stock shot)*Guidance also extends to single assessment processes, carried out by local authorities regarding welfare concerns – an assessment aims to determine if child needs any protection, and is carried out together with the Working Together to Safeguard Children 2015 guidance. These processes are multi-disciplinary, and involve all services involved with the family.

Local (LA) autism assessment

In the UK, the National Institute for Health and Care Excellence (NICE) has guidelines for autism assessment that local authorities and health and social care commissioners should follow, in order to meet best practice, and present their own Autism Health Care Pathway (see: www.tiny.cc/NICEpathway). For children requiring autism assessment, Local Authorities tend to refer individuals to the Community Paediatrics team, local specialist services (depending on the need), or the Child and Adolescent Mental Health Service, or CAMHS (although this service does have ‘referral thresholds’ that may include ‘associated mental health difficulties’. The NAS has previously criticised CAMHS (source: www.tiny.cc/NAS_CAMHS), stating in 2010: ‘Forty four per cent of parents find it difficult to get a first referral to CAMHS for their child, with a quarter waiting over four months for a first appointment, following referral. [CAMHS] professionals told us that many of their colleagues had not had basic autism training, meaning that they could not treat mental health problems in a child with autism).

UK statutory services available for autistic individuals

In the UK, there are some national statutory services available to autistic individuals and their families. For example, the Government has a duty to provide national statutory services at local level, e.g. schooling, housing, healthcare services, healthcare professionals (such as speech and language therapists), as well as child and adult services in the community, e.g. CAMHS. The Care Act 2014 and the Families Act 2014 cover assessment, care and support for those in need of it, and this legislation helps with a framework for local service providers to adhere to.

Image illustrating article showing the grandparent of autistic child ASD ASC.So, the above content is a brief over-view of UK legislation and statutory services. The big questions include: how easy is it to gain an autism assessment, especially for children; how is it fair that local services and waiting times differ so much across different geographical locations; is there sufficient and easy access to social care locally; and why is there (anecdotally) a seeming lack of training, understanding and awareness concerning many educators (in terms of identifying and supporting autistic pupils), and also mental health professionals? The NAS has reported that Government funding has been cut from services for disabled children and their families in England, and in 2019, joined forces with the Disabled Children’s Partnership (DCP), to call on the UK Government to reinstate funding, via the DCP’s ‘Give it Back’ campaign (see: www.autism.org.uk). The NAS also has extensive information at the same website under the heading ‘Accessing Adult Social Care – England’, detailing how autists can access a needs assessment by social services, and what support is available. They also detail how autistic people can access social care, services from the NHS and universal credit, as well as information on SEND school funding.

Disclaimer – Please note, we don’t proclaim to be experts on autism, and the information posted here is based on the author’s own experiences and exposures to autism.

 

‘Will the family understand an autism diagnosis?’

‘Will the family understand an autism diagnosis?’

A mum we know whose child may be autistic was recently asked whether her parents, the child’s grandparents, would understand an autism diagnosis.

The mum wasn’t sure, and her companion remarked that she doubted the grandparents would understand.

Image illustrating article showing the grandparent of autistic child ASD ASC.The connotations were that in their day, no one (outside of psychiatry circles), had heard of autism. Children of different neurologies were unkindly labelled at school, and you just had to get on with the card you were dealt.

But this got us thinking; no matter what your level of understanding, awareness and education about autism, and no matter whether you are an active computer user and are au-fait with the tools available on the internet, surely not understanding autism is a choice?

Most people do not understand physiological or neurological conditions unless we are involved somehow in the field – in fact few of us understand in a true sense the vast majority of topics, unless we have studied them.

But when you need to learn about something, most of us have the capacity and the resources to do our best and find out more. Not understanding autism is a luxury parents of autistic children are not afforded. Gaining education and awareness about the condition that affects your loved ones is surely a priority?

Grandparent with an autistic child (stock shot)The importance of learning more about the condition applies to lots of people surrounding an autistic individual, and ideally family members and anyone involved in their education should endevour to find out more. There are plenty of simple, bullet point resources outlining the very basics of autism (e.g. the main challenges the individuals face, and how to support them at home, and in the school or workplace environment) available; not just online, but also in libraries. The National Autistic Society is a good place to start – http://www.autism.org.uk.

And even if some of the library books may not be completely up-to-date or concise, the library staff are usually very happy to help with research, and accessing and printing information sourced online. It really feels that not understanding something is a bit of a cop-out. None of us are educated about anything, unless we go out and seek to improve our knowledge base!

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!