Archive | January 2021

My Pain Story Part 4

​This is the latest update on my chronic joint pain and on my efforts to lesson that pain.  In my last update I saw a delay in the local pain clinic services due to lockdown last spring.  They got back in touch with me last May with a letter informing me of an appointment with the pain clinic doctor I saw previously.  This was to be a phone appointment due to still being in lockdown.  I was not expecting to hear from her, but was pleased they still had me on their list.  The appointment was really just a check up to see how things were going and to make sure I still wanted to be on their list when services resumed again.  It was reassuring to be told that I could pick up where I left off after lockdown.  

The next communication from the pain clinic came in September.  I had a month to get back in touch and book an appointment with a pain specialist physiotherapist or they would assume I no longer wanted their services.  I got back in touch almost instantly.  Later that month I had my phone appointment with the physiotherapist.  She explained they were still unable to offer services in person, but were doing some things online.  She asked about my pain in detail and together we decided that the tai chi would still be something I could benefit from.  As suggested I had a go at some of the tai chi videos on the pain clinic website.  From the first try I felt it was something I would enjoy doing.  It seems to be about mindfulness with exercise which builds on things I have done previously both as a drama student and in laughter yoga classes that used mindfulness as a wind down at the end.  

Meanwhile as I was waiting for the first tai chi class, I started using Wii Fit.  I got a second hand Wii for my birthday with Wii Fit.  Having previously tried a Wii some years before and have seen Wii Fit I thought it might be a good way for me to motivate myself to get fitter.  Since mid September I have been trying to use Wii Fit for at least fifteen minutes most days, often longer.  I have found it extremely helpful to get me stronger and fitter.  It uses yoga, muscle exercises, aerobics and balance games.  It lets you work at your own pace and teaches the exercises one at a time, helping me to gain confidence in my abilities gradually.  Some exercise classes throw you in at the deep end and expect you to already be reasonable at things, with the Wii it lets you start at whatever level you are at even if that is absolute beginner.  I like how you score points and get feedback so you can see the progress you are making and what you need to work on more.  At the end of each training session you can take a body fit test and it will see how you are doing fitness wise overall.  My overall fitness scores have definitely been improving over the months. 

Then in October and November I had two video appointments online with the physiotherapist from the pain clinic.  She introduced me to tai chi with the basic stances and a few of the easier moves.  I practised between appointments and felt like I was getting the hang of it well.  Since I seemed to be enjoying it and benefiting from it, the physiotherapist put me forward for the group course.  Over eight weekly sessions it teaches tai chi adapted for pain management.

I had some technical issues at first trying to find a device that would work the application they use for the classes, since my tablet refuses to work with a rival companys video chat.  (They do assume you have the right technology and for some people this could be a serious issue.)  However I figured out a way to do it on my phone, although rather a small screen it did work well enough.  

The classes lasted about an hour each and gradually taught us the moves of tai chi building each week a longer routine of movements.  There are a few kinds of tai chi and the pain clinic use Shibashi Qigong which has eighteen moves in total.  Some of the moves combine with others making it easier to remember them all.  The classes also focused on body awareness and being present in the moment in a mindful way.  We shared at the end of each class together with how we were getting on with the tai chi during the week and how it was helping us.  There were about six of us in the class and we all agreed that tai chi was of some benefit to chronic joint pain.  

Tai chi is more of a work out than you may think.  Despite being fairly slow paced it stretches out muscles, helps posture, and improves breathing technique which eventually can improve lung capacity.  I find tai chi mentally beneficial as well.  The mindfulness is relaxing which is turn helps my muscles to relax; this is especially helpful for my tense shoulders.  

My shoulders are one of my most painful areas, especially the right one.  The physiotherapist says this comes from years of having had a limp that caused me to walk more on my right side.  Also previously having used walking aids such as crutches and a stick have probably not helped my shoulders.  Whilst doing tai chi I can actually feel my shoulders lowering and they feel as if they are less heavy.

Now that I have completed the tai chi course I need to keep up the practise of it so that I continue to benefit from it.  I use the videos on the pain clinic website fairly regularly and try to practise some of the stances and moves at home when I can.  Music can be helpful to a practise, especially calm classical music.  I am still using Wii Fit regularly and plan to buy the extension pack to this soon once I have reached a point I need to advance my workouts.  I feel fitter now than I probably have been for most of my life.  I can walk faster and further than I used to and feel less out of breath walking up hill than I once did.  I still get frequent joint pain, but less debilitating levels than it was most of the time.  I have managed to reduce the number of pain killers I take a fair amount, although I still take more than some people do.  Cold weather and having a period can cause my joint pain to flare up again sometimes and I still have to be careful not to over do the exercise and walking or I can suffer for it the next day.  

I will write another post on this one day if and when something interesting occurs with my pain.  I welcome questions and comments on my posts. 

Tai chi pain clinic videos:

https://www.torbayandsouthdevon.nhs.uk/services/pain-service/reconnect2life/improving-health-and-fitness/tai-chi/tai-chi-for-health/ 

You can find more relevant posts about my usual blog topics on my Facebook page Artificallyhip.

 

Autism Glossary 

A glossary of terms commonly used when talking about autism. When I first joined autism communities online some words and phrases were confusing terms for me and I thought it would be helpful to have a glossary of words to show how they specifically relate to autism and the autistic community.

The links used are where my main sources of information for each term came from, although I have often tweaked them to suit my needs and to what I feel fits best. The links provide more information on the terms should you be interested in finding out more.

ASD- Autism Spectrum Disorder

I did not even know where to start with describing what ASD actually is, so for this one I left it up to others with the quotes I think fit best.

‘Autism spectrum disorder (ASD) is a developmental disorder that affects communication and behaviour. According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), people with ASD have: Difficulty with communication and interaction with other people restricted interests and repetitive behaviours

Symptoms that hurt the person’s ability to function properly in school, work, and other areas of lifeAutism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience.’ (https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml)

‘Autism spectrum disorder (ASD) is a developmental disability caused by differences in the brain. Scientists do not know yet exactly what causes these differences for most people with ASD. However, some people with ASD have a known difference, such as a genetic condition. There are multiple causes of ASD, although most are not yet known.’

(https://www.cdc.gov/ncbddd/autism/signs.html)

Neurodversity/ Neurodivergent/ Nuerotypical

Neurodivergent people ‘have an atypical configuration, for example a person who has a developmental disorder and/ or a mental illness’, (www.disabled-world.com/disability/awearness/neurodiversity/).

Some types of recognised nureodivergence include autism, dyslexia, dyscalculia, epilepsy, ADHD, OCD and Tourette Syndrome, alongside other developmental and mental health disorders.

A nuerotypical person is someone who is not nurodivergent and has what is generally considered a typical brain arrangement. Often referred to as an NT person within the autistic community.

DSM- The Diagnostic and Statistical Manual of Mental Disorders/ ICD- International Statistical Classification of Diseases and Related Health Problems

The DSM is published by the American Psychiatric Association and is the manual used to diagnose autism in the USA.

The ICD is a medical classification list by the World Health Organisation (WHO).

Although the DSM is not commonly used in the UK, it is likely to have an influence on the next edition of the ICD. The DSM manual was recently updated and a revised edition of the ICD is expected in January 2021.

Aspersers

Asperger’s used to be thought of as a separate condition to autism. But in 2013, the newest edition of the standard book that mental health experts use, called The Diagnostic and Statistical Manual of Mental Disorders (DSM-5), changed how it’s classified. Now, Asperger’s syndrome is technically no longer a diagnosis on its own. It is now part autism spectrum disorder (ASD). Even so, lots of people still use the term Asperger’s.

Asperger’s type ASD people don’t have the learning disabilities that many autistic people have, but they may have specific learning difficulties. They may have fewer problems with speech but may still have difficulties with understanding and processing language.

(https://www.webmd.com/brain/autism/mental-health-aspergers-syndrome) (https://www.autism.org.uk/advice-and-guidance/what-is-autism/asperger-syndrome)

Self Diagnosis

Some adults identify as autistic without having an official diagnosis. After doing their own research on autism and sometimes chatting with other autistic people, they can come to the conclusion they are autistic. Some then go on to be formally diagnosed, but many do not. Some would like to be diagnosed officially, but find barriers stopping them. Some struggle to find a doctor who will refer them for the testing, it can be hard to be taken seriously by some doctors about autism. In some areas there is a lack of adult autism specialists to even refer someone to. Some can not afford to be tested, it can cost a lot of money and many insurance companies in the USA do not cover it. Some do not feel the need for a formal diagnosis; they feel they would not gain anything from it having already found support and information for themselves, often online. Self diagnosis is widely accepted by the autistic community.

Co morbid Condition

Co-morbidity is the presence of one or more additional conditions often co-occurring with a primary condition. ‘More than half the people on the spectrum have four or more other conditions. The types of co-occurring conditions and how they manifest varies from one autistic person to the next,’ (www.spectrumnews.org/news/conditions-accompany-autism-explained/)

ADHD- Attention Deficit Hyperactive Disorder

Attention-deficit/hyperactivity disorder (ADHD) is a mental health disorder that includes a combination of persistent problems, such as difficulty paying attention, hyperactivity and impulsive behaviour. ADHD causes hyperactivity and impulsive behaviour. People with ADHD often have trouble concentrating on tasks, are easily distracted, often have difficulty sitting still and often interrupt people when they are talking. Several traits of autism and ADHD overlap and this can cause incorrect diagnosis sometimes, although you can have both together.

(https://www.healthline.com/health/adhd)

ADD- Attention Deficit Disorder/ PDA- Pathological Demand Avoidance

Pathological Demand Avoidance is an Autism Spectrum Condition. Oppositional Defiant Disorder is not an Autism Spectrum Condition.

PDA is when there is an avoidance of the everyday demands made by other people, due to high anxiety levels when some feel that they are not in control. The main characteristics of PDA are resisting and avoiding everyday demands, using social strategies (such as distraction) to avoid demands, excessive and sudden mood swings and obsessive behaviour, often focused on people rather than objects.

Oppositional defiant disorder (ODD) is a disorder that is defined by a pattern of hostile, disobedient, and defiant behaviours. ODD is also characterized by angry and irritable moods, as well as argumentative and vindictive behaviours. These people will not only do things to purposely cause conflict or to purposely annoy the people around them, but they will oftentimes place the blame on others. ODD is most common in children, but a few never seem to grow out of it and will be ODD as an adult.

One difference between those with ODD or PDA is that thoses with ODD are less keen on embarrassing themselves in front of their peers; they are keen to fit in and can socialise in a typical way. People with PDA on the other hand, are more likely to have unpredictable outbursts, even in front of their peers, and they tend to try and control all social interaction without understanding why their peers do not like it and then shun them.

(https://www.stephstwogirls.co.uk/p/what-is-pda-pathological-demand.html) (https://www.valleybehavioral.com/disorders/odd/signs-symptoms-causes/)

OCD- Obsessive Compulsive Disorder

OCD has two main parts, obsessions and compulsions. Obsessions are unwelcome thoughts, images, urges, worries or doubts that repeatedly appear in the mind. They can make someone feel very anxious or unconfutable. Compulsions are repetitive activities that done to reduce the anxiety caused by the obsession. It can be something like repeatedly checking a door is locked, repeatedly saying the same phrase over and over or making sure your shoe laces are tied in the correct way. OCD can fluctuate in severity, some days it can be manageable to the point it hardly shows and others it can make life really difficult. It can be worse when stressed or upset. There are several overlaps between autism and OCD, but the main difference is for autistic people, repetitive behaviours are often soothing and a source of enjoyment, but if you have OCD, the obsessions and compulsions are intrusive and upsetting. Quite often people have both OCD and autism.

(https://www.autism.org.uk/advice-and-guidance/topics/mental-health/ocd/autistic-adults) (https://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/about-ocd/)

SPD- Sensory Processing Disorder

Hypersensitivities may include an extreme response to sudden loud noises, may notice background noises others do not, hates being touched or fear of climbing or falling even when there is no real danger.

Hyposensitivities may include a constant need to touch people or surfaces even when inappropriate, may not understand about personal space, enjoys movement based play, very high pain tolerance and possibly a thrill seeker to a dangerous level. SPD used to be thought of as something only autistic people could have, but although many autistic people have it, it is now thought of as a stand-alone disorder.(https://blog.brainbalancecenters.com/2012/04/signs-and-symptoms-of-sensory-processing-disorder)

APD- Auditory Processing Disorder

An auditory processing disorder causes difficulties distinguishing subtle sound difference with words such as cat or bat. Focusing on the important sounds in a noisy setting can be difficult and remembering what has just been said can be tricky. APD is not related to hearing loss, the sounds can be heard, but the brain has trouble processing and making sense of it. APD is fairly common in people with autism.

(https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/auditory-processing-disorder/understanding-auditory-processing-disorder)

VPD- Visual Processing Disorder

As with auditory processing disorder, visual A glossary of terms commonly used when talking about autism. When I first joined autism communities online some words and phrases were confusing terms for me and I thought it would be helpful to have a glossary of words to show how they specifically relate to autism and the autistic community.
The links used are where my main sources of information for each term came from, although I have often tweaked them to suit my needs and to what I feel fits best. The links provide more information on the terms should you be interested in finding out more.

Self Diagnosis

Some adults identify as autistic without having an official diagnosis. After doing their own research on autism and sometimes chatting with other autistic people, they can come to the conclusion they are autistic. Some then go on to be formally diagnosed, but many do not. Some would like to be diagnosed officially, but find barriers stopping them. Some struggle to find a doctor who will refer them for the testing, it can be hard to be taken seriously by some doctors about autism. In some areas there is a lack of adult autism specialists to even refer someone to. Some can not afford to be tested, it can cost a lot of money and many insurance companies in the USA do not cover it. Some do not feel the need for a formal diagnosis; they feel they would not gain anything from it having already found support and information for themselves, often online. Self diagnosis is widely accepted by the autistic community.
Co morbid Condition
Co-morbidity is the presence of one or more additional conditions often co-occurring with a primary condition. ‘Moe than half the people on the spectrum have four or more other conditions. The types of co-occurring conditions and how they manifest varies from one autistic person to the next,’ (www.spectrumnews.org/news/conditions-accompany-autism-explained/)

ADHD- Attention Deficit Hyperactive Disorder
Attention-deficit/hyperactivity disorder (ADHD) is a mental health disorder that includes a combination of persistent problems, such as difficulty paying attention, hyperactivity and impulsive behaviour. ADHD causes hyperactivity and impulsive behaviour. People with ADHD often have trouble concentrating on tasks, are easily distracted, often have difficulty sitting still and often interrupt people when they are talking. Several traits of autism and ADHD overlap and this can cause incorrect diagnosis sometimes, although you can have both together.

(https://www.healthline.com/health/adhd)

ADD- Attention Deficit Disorder/ PDA- Pathological Demand Avoidance

Pathological Demand Avoidance is an Autism Spectrum Condition. Oppositional Defiant Disorder is not an Autism Spectrum Condition.

PDA is when there is an avoidance of the everyday demands made by other people, due to high anxiety levels when some feel that they are not in control. The main characteristics of PDA are resisting and avoiding everyday demands, using social strategies (such as distraction) to avoid demands, excessive and sudden mood swings and obsessive behaviour, often focused on people rather than objects.

Oppositional defiant disorder (ODD) is a disorder that is defined by a pattern of hostile, disobedient, and defiant behaviours. ODD is also characterized by angry and irritable moods, as well as argumentative and vindictive behaviours. These people will not only do things to purposely cause conflict or to purposely annoy the people around them, but they will oftentimes place the blame on others. ODD is most common in children, but a few never seem to grow out of it and will be ODD as an adult.

One difference between those with ODD or PDA is that thoses with ODD are less keen on embarrassing themselves in front of their peers; they are keen to fit in and can socialise in a typical way. People with PDA on the other hand, are more likely to have unpredictable outbursts, even in front of their peers, and they tend to try and control all social interaction without understanding why their peers do not like it and then shun them.

(https://www.stephstwogirls.co.uk/p/what-is-pda-pathological-demand.html)

(https://www.valleybehavioral.com/disorders/odd/signs-symptoms-causes/)

OCD- Obsessive Compulsive Disorder

OCD has two main parts, obsessions and compulsions. Obsessions are unwelcome thoughts, images, urges, worries or doubts that repeatedly appear in the mind. They can make someone feel very anxious or unconfutable. Compulsions are repetitive activities that done to reduce the anxiety caused by the obsession. It can be something like repeatedly checking a door is locked, repeatedly saying the same phrase over and over or making sure your shoe laces are tied in the correct way. OCD can fluctuate in severity, some days it can be manageable to the point it hardly shows and others it can make life really difficult. It can be worse when stressed or upset. There are several overlaps between autism and OCD, but the main difference is for autistic people, repetitive behaviours are often soothing and a source of enjoyment, but if you have OCD, the obsessions and compulsions are intrusive and upsetting. Quite often people have both OCD and autism.

(https://www.autism.org.uk/advice-and-guidance/topics/mental-health/ocd/autistic-adults)

(https://www.mind.org.uk/information-support/types-of-mental-health-problems/obsessive-compulsive-disorder-ocd/about-ocd/)

SPDSensory Processing Disorder

Sensory processing disorder is when the brain has trouble receiving and responding to information that comes in through the senses. Sensory issues are usually defined as either hypersensitivity (over-responsiveness) or hyposensitivity (under-responsiveness) to sensory input.

Hypersensitivities may include an extreme response to sudden loud noises, may notice background noises others do not, hates being touched or fear of climbing or falling even when there is no real danger.

Hyposensitivities may include a constant need to touch people or surfaces even when inappropriate, may not understand about personal space, enjoys movement based play, very high pain tolerance and possibly a thrill seeker to a dangerous level. SPD used to be thought of as something only autistic people could have, but although many autistic people have it, it is now thought of as a stand-alone disorder.

(https://blog.brainbalancecenters.com/2012/04/signs-and-symptoms-of-sensory-processing-disorder)
APD- Auditory Processing Disorder

An auditory processing disorder causes difficulties distinguishing subtle sound difference with words such as cat or bat. Focusing on the important sounds in a noisy setting can be difficult and remembering what has just been said can be tricky. APD is not related to hearing loss, the sounds can be heard, but the brain has trouble processing and making sense of it. APD is fairly common in people with autism.

(https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/auditory-processing-disorder/understanding-auditory-processing-disorder)
VPD- Visual Processing Disorder
As with auditory processing disorder, visual processing disorder is not about a visual impairment, but when the brain has trouble making sense of the visual input it receives. Some have trouble judging distances, with colour, size and direction. Again VPD is fairly common in people with autism.

(https://www.readandspell.com/visual-processing-disorders)

NVLD- Nonverbal Learning Disorder

A non-verbal learning disorder is characterised by good verbal skills whilst struggling with non-verbal ones. Picking up on body language such as voice tone and facial expressions can be tricky. It can affect social skills making it tricky to keep friends as social cues can often be missed. People with NVLD often talk a lot, but do not always share in a socially acceptable way. Spatial awareness can be another common issue with NVLD along with coordination issues and trouble with maths especially fractions, geometry and word problem. Although NVLD does not appear in the Diagnostic and Statistical Manual of Mental Disorders and is not yet an officially recognised condition there is a growing awareness of it amongst medical professionals. Also there may be more specific conditions that are diagnosable as part of the NVLD that could get someone more support in education and disability services.

(https://www.understood.org/en/learning-thinking-differences/child-learning-disabilities/nonverbal-learning-disabilities/understanding-nonverbal-learning-disabilities)

(https://nvld.org/non-verbal-learning-disability/)

Learning Disability/ Intellectual Disability

Slightly confusingly here in the UK we often refer to learning disabilities as learning difficulties. Whilst we call intellectual disabilities learning disabilities.
A learning disability or difficulty is a condition that impacts on someone’s ability to learn something at the same rate as their peers. Having a learning difficulty does not make someone less intelligent, it means they have difficulties in a specific area. There are many kinds of learning difficulties including dyslexia, which affects someone’s ability to read and comprehend text. Dyscalculia, which affects maths capabilities and sometimes problem solving. Dysgraphia, which affects the physical act of writing and written expression, to name a few. Autistic people commonly have some kind of learning difficulty as a comorbid condition.

(www.understood.org)

An intellectual disability affects the way someone understands information and how they communicate. This means they can have issues learning new skills, understanding complex information and cooping independently. A learning disability can vary in severity. Some can look after themselves and live independently as adults, but take a while to lean new skills. Some need help with everyday tasks for their whole lives. Causes can include down syndrome, fragile x syndrome, cerebral palsy, problems in pregnancy or birth and exposure to certain diseases at crucial stages of development. About 1% of the general American population is thought to have an intellectual disability and about 10% of those with intellectual disabilities are thought to have autism.

(www.aruplab.com/testing/autism)

Savant Syndrome

A rare condition where someone with a developmental condition such as autism can have an extraordinary talent that stands out in contrast to their overall disability. Savant skills can exist in any area, but most commonly seem to occur in art, music, maths and memory recall. One in ten autistics are said to be savant, but there are even rarer cases of prodigious savant syndrome where an individual’s skill goes beyond what is seen in the general population. (https://molecularautism.biomedcentral.com/articles/10.1186/s13229-018-0237-1) (www.ncbi.nlm.gov/pmc/articles/PMC2677584/)

Meltdowns

A meltdown is a reaction to sensory overload. To outsiders it can look like a temper tantrum, but it is not. A tantrum is more controlled and used by someone to get their own way. A meltdown is not so controllable and it is not something someone chooses to have. A meltdown can be triggered either suddenly, almost like a seizure or can be the result of lots of things over time building up and becoming too much. My meltdowns tend to be very angry and often involve a lot of shouting, stomping and crying, but some people also self harm and break things during a meltdown. A meltdown is horrible to go through and can be like all my recent emotions trying to express themselves and escape all at once. Feelings that tend to trigger meltdowns include frustration, confusion and anxiety.
Shutdowns
Some autistic people have shutdowns which can appear to be a bit like the opposite of a meltdown. A shutdown is about withdrawing from the world around them. It can be someone is unresponsive to communication; some hide away and some literally will be unable to move from the spot they are in no matter where they are even a public place. Shutdowns often have the same triggers as meltdowns and some meltdowns can turn into shutdowns, starting off with a meltdown then withdrawing till stress levels have reduced.

(https://www.autismwestmidlands.org.uk/wp-content/uploads/2017/11/Meltdown_shutdown.pdf)
Stimming (Self-stimulatory behaviour)

Stimming is a repetition of physical movements, sounds, words, or moving objects. Almost everyone stims in some way, however in autistic people stims can be far more obvious and can carry on longer than in other people. Autistic people often stim to self sooth when stressed or anxious or to express frustration. Stims can include biting fingernails, hair twirling and drumming fingers. However in autistic people it could be rocking back and forth, snapping fingers, rubbing a particular object, chewing something or rubbing the skin. Rotating objects such as fidget spinners are also used as a form of stimming.

(https://www.healthline.com/health/autism/stimming#behaviors)

Self Injuries Behaviour

Self-injurious behaviour is a reflection of emotional distress and is usually an indication that someone is struggling to cope with overwhelming feelings. Some autistic people have stims that can be self-injuries behaviour such as head-butting, biting themselves, excessive scratching of the skin or punching themselves. Whilst autistic people should be free to stim, when a stim is self-injurious then it may need to be controlled in some way to prevent more harm. This can be done by redirecting the stim into something safer or changing the environment to prevent the need for the behaviour.

(https://www.jedfoundation.org/non-suicidal-self-injurious-behavior/)

Selective Mutism

Selective Mutism is a failure to speak in certain settings persistently. This is most common in children who often can speak fine at home, but struggle when in school and sometimes in other environments outside of home. Some will participate in events non-verbally and others may struggle to take part at all. Selective Mutism is classed as a social anxiety disorder and not diagnosed as part of autism, but seen as a separate condition by itself. It is sometimes misdiagnosed as autism as some of the characteristics are very similar. With Selective Mutism it is more about anxiety in particular settings, where as in autistic people it can be more about not understanding the subtleties of social interaction.
Echolalia/ Scripting

Echolalia is when someone repeats phrases and sounds they have previously heard as a form of communication. People with Echolalia often struggle with communication and may repeat exactly what they just heard on a TV show or in films or even what someone else has said to them. When used as a way to communicate when struggling to express themselves this is known as functional echolalia. A phrase from an advert or film maybe used that fits a situation. However non-functional echolalia is when the sounds or words have no real meaning to the situation. This can be used almost like a stim with the sounds having a calming effect on them. Most toddlers do this to develop language skills, but over the age of three this is far less common. However a lot of autistic children carry on using echolalia for far longer and especially if they’re experiencing delayed speech development. It is often a good sign that a child will eventually develop fully functional speech even if it is delayed in coming.

(https://www.healthline.com/health/echolalia#differences)

(https://www.verywellhealth.com/why-does-my-child-with-autism-repeat-words-and-phrases-260144)

Masking

Masking or camouflaging is where autistic people learn, practice, and perform certain behaviours and suppress others in order to appear more neurotypical. An example of masking might be an autistic person practicing smiling or making eye contact at moments that are considered ‘socially acceptable’ by neurotypical people, even though it feels uncomfortable and can be exhausting for them. Sometimes masking is more complex, for example an autistic child studying, and then mimicking the behaviours of a neurotypical child their age; from how they dress, to their interests, jokes, and social behaviours. Masking can be helpful in certain situations, but to always be hiding your true self can wear you out and can lead to mental health issues. Masking is often used when autistic people feel excluded from society or at least a certain situation they find themselves in.

(https://www.tiimoapp.com/blog/masters-of-masking-autistic-men-who-camouflage/)

Alexithymia

Alexithymia is a difficulty recognising emotions either your own or other peoples. Some can find bodily sensations connected to emotions confusing and struggle to communicate how they feel. It is not a formally diagnosable condition, but often goes alongside mental health conditions such as PTSD and depression. It is most commonly associated with autism, and whilst many autistic people have alexithymia, it is a distinct personality trait that not every autistic person has.

(https://www.medicalnewstoday.com/articles/326451#autism)

Hyperverbal

Whilst the stereotype of autistic people is that we hardly talk, some of us are actually hyperverbal meaning we over talk to an almost obsessive level. Often it is fuelled by social discomfort, a nervous trait used to try to disguise being uncomfortable. In my case, I have an overwhelming desire to say out loud a lot of what I am thinking. It is almost as if my thoughts do not seem valid if I do not say them out loud. Also I dislike long silences because then I have to listen to my own thoughts and with OCD and autism they can be sometimes not all that helpful to listen to.
Speech Therapy

A lot of autistic people have language and communication issues, speech therapy can help with this. There are various techniques that can be used to help an autistic child with this. As well as working on speech itself, other methods of communication are often explored. These can include electronic talking devices, signing, typing or a picture board. Sometimes this can lead a child to talk later once they have more confidence in communicating. Speech therapy maybe accessed through school, through a referral from a medical professional or privately. Sometimes an autistic adult may also benefit from working with a speech therapist.

Elopement/ Wandering

Elopement is the urge to leave a safe place such as school or home without telling anyone. It mostly commonly happens in some autistic children, but while most grow out of it, a few carry on this behaviour into adulthood. Some children with autism may not have the same awareness of their own safety as other children their age might which makes this behaviour worrying. Some will just keep going and run across roads or walk into dangerous areas such as building sites. The two main reasons a child may do this is either to leave a situation they are uncomfortable in or to get to someone or something they want. Some also just enjoy the feeling or running.

(https://www.appliedbehavioranalysisedu.org/what-is-elopement/)

ABA- Applied Behaviour Analysis

Applied analysis (ABA) is a behavioural therapy which has the goal of changing observable measurable behaviour, usually by manipulating a situation or using reinforcement. ABA is a fairly loose term these days to describe a lot of autism therapy and some of it is better than others. However most ABA is designed to get autistic people to be the same as their peers. The idea is often to get the autistic person to change rather than to accommodate them. This can result in autistic people doing things that make them uncomfortable or even hurt them in an effort to appear ‘normal’. A lot of autistic people are now speaking out against ABA as harmful as it can cause an autistic person to feel they are broken and that society rejects their true self.

(https://autisticuk.org/does-aba-harm-autistic-people/)

Advocate/ Advocacy

An advocate represents some ones views and rights. They make sure that a person is able to have their say and to access the services they need. Some autistic people struggle to communicate in certain situations or get confused easily by a situation they are not familiar with. An advocate is often a parent or family member, but could also be a social worker, carer, support worker or anyone who the person trusts to speak on their behalf. An advocacy service can also help, when an organisation can provide an independent advocate for someone. This maybe someone with specialist knowledge for a particular situation such as applying for benefits or legal situations. Other times an advocate can be useful is during medical appointments, dealing with housing issues and in educational settings.

(www.autismeducationtrust.org.uk/home-law-money-get-the-facts/what-is-advocacy/)

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