Late Autism Diagnosis

Greetings Earthlings! 😀

This week after reading that British comedian Johnathan Ross’s daughter received an autism diagnosis late in life, I thought I’d write about my own experience of receiving an autism diagnosis as an adult.

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As you may know from my blog intro, I was diagnosed with Asperger’s Syndrome a few weeks shy of my 24th birthday. With autism diagnoses on the rise in recent years, it seems hard to imagine that a person would not be diagnosed until their twenties, but this was my reality. As it turns out, I was far from alone in my predicament with such notable autists as Susan Boyle, Anne Hegerty, Dan Aykroyd and Gary Numan all receiving adult diagnoses.

So why are so many autists only being diagnosed as adults?

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Leading autism experts have described a “lost generation” of autists who grew up during a time where autism was poorly researched and understood. Many high functioning autists did not fit the criteria for classic autism, and as such slipped through the diagnostic radar. It is only in recent years following the introduction of the spectrum concept that many previously undiagnosed autists are finally getting the diagnosis they should have received decades previously. 

In my case, I was both academic and social in school, so no one really batted an eyelid or questioned that something was amiss. My meltdowns were put down to stress (you would not believe the amount of school reports to my parents that said I needed to chill!😂) or temper tantrums, or just plain being a drama queen- oh if my teachers/friends only knew that I wanted none of the attention that my meltdowns brought! 😛 It was only after I failed to grow out of my quirks in college and worsening social anxiety that my family sought to diagnose me (you can read the full story here).

In fact, statistically speaking, the vast majority of women with autism do not get their diagnosis until they are adults, often going unnoticed due to our ability to socially mask, or in some cases, misdiagnosed with conditions co-morbid with autism. Moreover, as I have discussed in numerous posts, women often present with completely different autistic traits to men, but these differences went unnoticed by the medical community for decades as the original descriptions of autism were based on a largely male cohort of patients.

So you’ve got your autism diagnosis, what happens now?

For many, the diagnosis comes as a relief. It feels as though you’ve got the final missing piece of a jigsaw puzzle, like you’re just seeing the full picture of yourself for the first time. However, it equally takes a while to get your head around it all, and the experience often leaves you with more questions than answers. You’re handed this life changing diagnosis, but realistically there are little to no supports available for autists over the age of 18 in most countries. So where does that leave you?

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Here are some tips that I found helpful for dealing with a late autism diagnosis:

Educate yourself- I’ve always had a thirst for knowledge, so whenever I don’t understand something I hit the books. Learning about autism was one of the cornerstones to helping me to better understand and embrace my diagnosis, allowing me to be a little kinder to myself in my symptomatic moments.

Check out some autism blogs/diagnosis stories- I found that reading the stories of other autists was quite comforting as I was coming to terms with my diagnosis. You’re not alone in this 🤗

Link up with local autism support groups/charities– there’s no better source of information and available supports than those who’ve gone through an autism diagnosis in your area. They will all have been through the same thing as you, whether as a recently diagnosed adult or as a parent to autistic child, and will be able to provide you with the best resources available in your locale.

Try CBT– as I’ve discussed in a previous post, CBT wasn’t really my thing for helping me manage my symptoms, but it was highly beneficial in those early few months after my diagnosis to have a professional there who knew about autism to talk things through and to help me to understand my behaviours better.

Talk about it with your friends and family– in many ways, an autism diagnosis is not a journey we walk alone; our friends and family walk it with us. They are on a journey to better understand you too and will want to be there to support you in every way you need.

At the end of the day, while it was not ideal receiving an adult diagnosis, the personal and mental benefits that I have attained in recent years have been completely worth it. I finally understand myself and feel comfortable in my own skin. At long last, I’m able to fully be me in all the weird and wonderful ways God made me to be 🙂

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Hope you enjoyed this post dear Earthlings! 🙂

Stay safe!

Aoife

Autism and Working from Home

Greetings Earthlings! 😀

As the lockdown continues, this week I’d like to discuss the topic of working from home and autism.

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Although the prospect of working in a comfortable environment away from the social jungle of the workplace can be quite attractive, working from home may pose other challenges for autists. As discussed in previous posts, an ordinary working day can be difficult enough for an autist, but the lack of a regular working routine, the stress of remote video meetings/phone calls, and difficulty focusing on work when surrounded by home comforts, may spell trouble.

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Like many, I have spent the past few weeks working remotely from my family home. Thankfully prior to this crisis, I have regularly been afforded the opportunity to work from home, so this transition has not been as much of a shock to the system as it may have been for other autists.

Working from home isn’t always easy, but by putting the right structures in place you can easily navigate this minefield.

So here are some of my top tips for working from home:

Set aside a specific workspace: setup a corner of the house, a specific room or a desk space from which to work from. Remove any potential distractions from this space, setup your laptop/screen, add a few pens- get everything you’ll need for your working day ready. This will give you more structure and make it easier to work. Try to keep this space separate from where you spend your leisure time- you don’t want to feel like you’re in work mode when you’re watching Netflix late at night.

Work regular break times into your schedule: organize set break times throughout the day- coffee at 11, lunch at 1, a 3pm snack, whatever works for you. It can be hard for an autist to detach when you get into the zone (especially when working solo), but several hours of uninterrupted work are not good for your mental or physical health. Pick your break times and stick to them, giving further balance and structure to your day.

Get out of your PJs- I know it’s tempting to sit there in your comfy clothes (especially given many autists sensitivity to clothing), but you need to get up and get dressed. It will give you better routine and structure to differentiate between work and play- and it will also remove the stress of being caught in a state of dishevelment if an unscheduled work call catches you off guard 😉

Try to schedule work meetings– Communication with colleagues is all over the place these days with entire companies working remotely, and the stress of unexpected calls and the stream of instant messages pinging in the background can be quite distracting for an autist. If you can, try to set aside set times for when work conversations/team catchups can be held- this will help give you further structure and routine

Ask if you can keep your camera off– If you’re really feeling shy and uncomfortable, ask if you can keep your camera off during a meeting. Lot’s of people are having issues with slow internet and will need to turn their cameras off, so don’t feel obliged to if you’re really uncomfortable with video conferencing. It’s not always an ideal solution for teams that need to visually gauge team mates responses, but if you explain your struggles to your employer I’m sure they will understand, especially in these trying times. Just try not to fall asleep on the job… 😛

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Hope you enjoyed this post dear Earthlings!

Enjoy the weekend! 🙂

Aoife

Autism and Coping with Disappointment

Greetings Earthlings! 🙂

As I was unable to travel on a much anticipated break to the north of Italy last week due to the coronavirus outbreak (just my luck!), the subject of disappointment has been weighing heavily on my mind.

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Disappointments, whilst an unfortunate fact of life, are oftentimes more difficult for autists to cope with. As we feel emotions on a much greater scale than neurotypicals, naturally, we oftentimes find disappointments quite tough. Neurological impairments in emotional processing can make it difficult for an autist to wrap their head around the sinking feeling of disappointment which can trigger meltdowns and shutdowns depending on the level of disappointment.

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I’ve not always had the greatest experiences with disappointment in my own life. Growing up, something as simple as a friend cancelling plans, or missing an episode of CSI could bring me to tears; if it were something greater like a bad test result or not being chosen for a team, I could isolate myself for hours melting down as if it were the worst thing in the world.

Thankfully as I’ve grown older, it’s been a lot easier to navigate disappointments- I’ve been surprisingly calm about missing my holidays last week for example.

 

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Here are some of my top tips for coping with disappointment:

Write it out– when your mind is overwhelmed by your disappointment, I’ve found that verbalizing your feelings in writing can really help to relieve the pressure in your head.

Contextualize the situation– try to see the bigger picture through your disappointment. Will this matter in a few days, weeks or months? Things may feel like the end of the world after a disappointment, but as my mother always says- “it’s not cancer!”

Focus on the good-I know it seems obvious, but focusing on the positive side of things and the things that you have going for you can really help to pull you out of a funk and divert a potential meltdown.

Hope you enjoyed this post dear Earthlings! 🙂

Enjoy the weekend!

Aoife

Autism and Self Injurious Behaviors (SIBs)

Greetings Earthlings! 🙂

This week I’d like to discuss an issue that impacts roughly half of all autists at some point in their life- self injurious behaviours or SIBs.

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So what are SIBs?

Self-injurious behaviours are simply behaviours where a person physically harms themselves. This can manifest as self biting, hair pulling, skin picking, hitting, head banging (not the good kind 🎸), cutting etc.

So what triggers this sort of behaviour in autists?

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Research suggests that there are a number of potential physiological and psychological reasons for self injury:

Biochemical factors- Some studies have indicated that neurotransmitters such as dopamine and serotonin may be associated with self injury. This may be particularly relevant given that these neurotransmitters are often dysregulated in autism which may predispose us to such behaviours.

Stimulation– Like stimming, some research suggests that SIB’s may be a repetitive behaviour in response to a lack of or an increase in sensory stimulation. Some autists may self harm to increase their alertness in times of low stimulation; other’s my harm in response to stress or anxiety to dampen their emotions.

Pain- Ironically, SIBs can be a response to pain as a means of reducing it. Beta endorphins (opiate like substances in the brain) may be released following self injury which can dampen the pain response. Moreover, self injury may act as a diversion from the pain that an autist may be experiencing in another region of the body, or in response to a sensory stimulus that causes pain (e.g the noise of a fire alarm may register as painful to an autist).

Communication and Frustration– Some autists may be unable to communicate an emotion that they are experiencing and may resort to SIB’s out of frustration or in a non-verbal attempt to communicate that something is wrong, boredom, excitement etc.

Control- As in the case of eating disorders, self harming may provide an autist with a sense of control when life spins out of it.

 

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SIB’s can be deeply distressing for a friend or parent to witness, but when mild, they are often not cause for concern. If these behaviours are escalating however, there are a number of interventions such as medications, CBT, autism support dogs (I’ve seen amazing videos of dogs calming down autists/using their paws to intervene and stop self hitting) and encouraging replacement behaviours such as wearing rubber bracelets and necklaces to divert self biting and skin picking impulses.

Hope you enjoyed this post dear Earthlings! 😀

Enjoy the weekend!

Aoife

Autism and Time Management

Greetings Earthlings! 😀

You may or may not have noticed that I haven’t been posting as frequently lately to the blog as I have been extremely busy offline. As such, this week I’ve been inspired to discuss the topic of time management 🙂

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Time management is something that many people struggle with, however, as with several every day tasks, this can be even more of a challenge for an autist. Many autists have difficulty with information processing, understanding the concept of time and predicting the outcome of actions, which can make it tricky to organize and prioritize tasks.

For me personally, time management is something that I’m really good at (most of the time), but it can often be a source of great stress. Trying to wrap my head around the tasks to be completed, once plans are in place spending ages mentally going over and over the particulars, beating yourself up for not being able to achieve all that you’ve set out to do within a certain time frame- I can be pretty hard on myself for this. I’m capable of juggling so many balls at once I often get frustrated that I’m not juggling as many balls as I could be during my downtime (like spending the weekend napping instead of writing). This has perhaps been one of the hardest time management attitudes to break since joining the workforce 😛

I’m no expert when it comes to time management, but here are some tips that I’ve found helpful:

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Colour coding– colour coding different tasks for importance can be a great way to help you assess and prioritize tasks- with the added plus that this may also help you to remember your “to-do’s” through stimulation of the creative right hemisphere of the brain.

Write things down/get a diary– I don’t do this as often as I should; but it is a great way to organise both your tasks and your thoughts. Life became a whole lot easier when I took the extra few minutes to make a shopping list rather than frantically running round the shop back in college.

Focus on small, easily achievable tasks fist- as with studying, this can be a great way to keep from getting overwhelmed by the volume of tasks that you need/or want to complete and will help you learn to prioritize better. For example, today I need to pick up some groceries and walk the dog; that painting I want to finish off can wait until the weekend.

Set reminders/alarms– if paper’s not a good option for you, setting alarms or calendar reminders on your phone can be a great way to keep on top of things. I’d never make a meeting on time if it wasn’t for my Outlook calendar reminders!

Make time for you– this can often be the toughest part of time management for an autist in my experience. You can get so focused on all that needs to be done, you easily forget that just because something needs to be done, doesn’t mean it has to be done right away. Patience isn’t always an autistic virtue, in spite of the irony of the world needing to be patient with autists!😂 Make sure that in the midst of a heavy schedule, there are always “me moments” scattered throughout.

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Hope you enjoyed my post dear Earthlings! 😀

Until next time!

Aoife

Autism and Studying

Greetings Earthlings! 😀

This week I’d just like to write a quick post about studying and autism.

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Knuckling down and studying can be hard at the best of times, but even more so for an autist. There are often learning challenges such as dyslexia, dysgraphia and concentration issues with ADHD which can make studying quite tricky. Frustrated meltdowns when things aren’t clicking can also be tough to navigate (can’t tell you how many times I chucked my maths book at the wall trying to study!😂).

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So here are some of my top tips for studying on the spectrum:

Stimming-Self stimulatory behaviours can be a useful way of channeling excess brain activity. By having a stress ball, a pen to chew or something to fidget with can help to free up your mind and allow you to better concentrate on the topic you’re studying.

Make it Visual- Autists are often very visual and highly creative, many operating between both the logical left and creative right hemispheres of the brain at the same time (due to the absence of a connecting bundle of nerves that splits the brain in two). Making things visual using graphs, videos and images can help to improve concentration by stimulating the creative right hemisphere of the brain instead of the usual logical left.

  • Aoife’s top tip: Use coloured pens for note taking. This was one of the best pieces of advice that my art teacher gave me as it really helped my concentration and retention levels by manipulating neuroscience! However, be careful with the colour choices as some autists can be hypersensitive to certain colours like yellow. Find the colours your child likes and buy lots of pens in those colours for them to write out their notes. My friends in college often told them how happy my notes made them as a rainbow of colour waved back at them every time I opened my notebook 😂

Bribery– I know this is one of my more common tips for managing numerous autistic traits, buuuut bribery is one of the best motivators! Concentration wasn’t always an issue for me when studying, but motivation was. When it came to boring subjects I just tuned out, so my mother traded me gaming hours for hours spent studying- 2 hours study meant 2 hours on the Playstation! It proved highly effective! 😂

Set small goals and take frequent breaks– This can be tricky for the all or nothing autistic mind, as once you get going, you tend to want to get it all done at once, which can often lead to frustration when you’ve pushed your brain past it’s limits. Setting small goals and taking regular breaks can be one of the best ways to study, especially where concentration levels can be an issue. Focusing on one small task at a time can build up a sense of achievement and encourage you to keep going without getting overwhelmed and frustrated. To this day I still do this at home or in work when I get overwhelmed by the volume of tasks that need to be completed.

Focus on what you can do before tackling more challenging subjects– One of the most commonly advised exam strategies is to complete the questions you do know first before going back to the harder ones to avoid getting overwhelmed and to build up your confidence. The same goes for studying- I’ve used this mantra several times of late when I’m writing to get me started on a task and keep from getting overwhelmed and it never fails! It’s not the easiest habit to form for an autist (as logic dictates everything should be done in exact order), but once you get in on it everything becomes so much easier 🙂

Take advantage of all available aids– when it comes to exam time, accept the help of a scribe or a reader (if you’ve dysgraphia or dyslexia) and take any extra time offered to you. Educational departments understand that autists often need a little extra time and help during exams, so if you need it take it- there’s no shame in asking for it. I was past my schooling by the time I got my diagnosis, but it would have been nice to have had a little extra time for exams when awkward questions threw me, or at least the comfort of knowing it was there if needed.

If you follow these tips you’ll be studying like a pro before long!

And always remember- it’s just temporary! We all have to study at some point (unless you’re one of the lucky few with an eidetic memory) to get to where we need to go, but it’s not forever, just keep focusing on the finish line and you won’t go wrong 🙂

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Hope you enjoyed this post dear Earthlings! 😀

Enjoy the weekend!

Aoife

Autism and Stress Management

Greetings Earthlings! 🙂

Leading on from my previous post, this week I’d like to briefly discuss stress management and autism.

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As highlighted previously, it’s very important for autists to manage their stress levels for our long term mental and physical health due to our higher levels of biological stress.

To an autist, life and the world can be quite overwhelming so it can be very difficult to manage stress when surrounded by stressors.

So here are a couple of tips and tricks for managing stress with autism:

Weighted blankets- these are often recommended to help manage autism. As I’ve discussed previously, autists have higher levels of stimulatory neurotransmitters and lower levels of calming neurotransmitters. Weighted blankets contain metal or plastic beads in the quilted layers to apply deep, calming pressure to the user- like simulating a hug. This pressure is designed to stimulate the release of serotonin and dopamine to relax and calm the racing mind.

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“Stimming”- Self stimulatory behaviours such as hand flapping or noise making can help to calm down the brain using a similar biological mechanism to weighted blankets. Glutamate is one of the excess excitatory neurotransmitters that is released in the autistic brain. When we “stim” it triggers the brain’s reward system to release the pleasure hormone dopamine which causes a decrease in glutamate levels, effectively calming the brain! Items such as stress balls and fidget spinners can be useful tools for stimming to channel excess neurological energy in this way 🙂 

Specialist interests- specialist interests can be one of the most effective ways of coping with stress. They often provide a safe haven, a way to switch off and escape from the pressures of life which can help autists to manage stress. Hobbies are great dopamine and serotonin boosters- both of which are dysregulated in autism. I doubt I’d have survived my teenage years without the escape that Harry Potter gave me! 

Exercise– the old adage of healthy body, healthy mind really rings true here. There’s nothing like working up a good sweat or going for a nice walk to release endorphins and lower your stress levels.

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Preparedness– one of the most stressing aspects of autism is navigating and coping with the unknown. Nothing get’s my stress levels up more than finding myself in a situation that I don’t know how to navigate- like getting lost on the road in an unfamiliar area; driving in general is one of my largest stressors 😛 Plan routes, study timetables, look up menus- all these little things add up to reduce your stress in the long run. You can’t prepare for everything, but every little bit helps 🙂

At the end of the day, everyone has their own methods for minimizing stress and as with autism, stress management is not one size for all. Try and find what works for you or your child and you’ll be amazed at the difference it makes 🙂

Hope you enjoyed this post dear Earthlings! 😀

Have a lovely weekend!

Aoife

Autism and Change

Greetings Earthlings! 🙂

David Bowie: “Ch-ch-ch-anges-”

Autism: NOOOOOOOO!

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Yes, this week we’re going to talk about autism and change! 😂It’s a well known fact that autists do NOT like change. We like routine, structure, predictability- we like to be in control.

Historically, I’ve never been the greatest with change. As a child I went into a full-scale meltdown when the school banned chocolate (it’s pretty hilarious when I picture my 11 year old self wailing “I’m a chocoholic!” at the teacher!😂), I couldn’t sleep for 2 weeks after my sister changed the angle of her bed; worse still when we sold my family home, it took years to get my head round the loss. Sure, it may have only been 4 miles up the road, and I still went to the same school, but this one simple shift was as if a ton weight had been dropped on my fragile, pubescent head.

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New things can be a lot more complicated for an autist than the average person. You have to consider the sensory implications- how might a new smell affect you; will the taste of this new food make you sick; will this new top make you want to rip off your own skin? Last year I tried paint-balling for the first time without pausing to think of any potential sensory issues. The noise of the guns, the overpowering smell of the mask, the pain when I got hit- I was completely overwhelmed! I had to be removed within 10 mins after having a meltdown behind a tree! At least I drove myself there so I could make a quick escape to the PS4 to shoot things from the safety of my couch instead 😉

It’s not that an autist is not capable of change, it’s just oftentimes it can be a lot easier to stick with the status quo for fear of the unknown.

If it ain’t broke, don’t fix it! I know I like a particular dish at a restaurant, so why would I rock the boat and risk an adverse sensory reaction?

That being said, here are some tips to cope with change:

Take baby steps- you’ve got to learn to crawl before you can walk. Make small changes in your life and you’ll gradually learn to cope with bigger ones.

Challenge yourself- Setting goals to change something in your life can be a great motivator. Choosing to make a change on your terms can help to prepare you for the unexpected changes that life likes to throw at us.

Do the research– for any impending changes, take the time to educate yourself. If moving to a new place, familiarize yourself with the area- check out the amenities, the bus routes, use google street view to digitally walk around etc. The more you know about it, the sooner it becomes familiar which ultimately feels like less of a change.

Rewards and bribery– not always the best plan but it can help to incentivise behaviour change! As I’ve discussed previously, bribery worked to help me change my study habits as a teenager by trading hours of study for hours of gaming!

You can read more tips for coping with change in the link below:

https://www.autism.org.uk/about/behaviour/preparing-for-change.aspx

But might there be a scientific explanation for our struggles with change?

In 2017, researchers discovered that the posterior cingulate cortex of the brain is associated with changes in routine behaviour. As of yet this area has not been extensively studied, however the research would suggest that there is some level of dysfunction taking place in this cortex in the autistic brain. Current evidence indicates that there is poor connectivity, reduced metabolic activity and structural changes at the cellular level in the neurons within this region.

No wonder change is difficult if your brain is actively fighting against you! Perhaps the real change that is needed is our attitude towards an autists struggles with change; maybe then change won’t be so scary after all 🙂

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Have a good weekend Earthlings! 🙂

Aoife

Autism and Clothing

Greetings Earthlings! 🙂

This week I’d like to briefly expand on something that I touched on in my previous post about skin sensitivity, -the importance of clothing and autism.

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No, I’m not going to talk about fashion, but function!

For many autists, it can be quite difficult to pick out clothes. A stray fiber, an itchy label or a prickly seam can unleash a storm of sensory discomfort. Gene mutations cause the nerves in our skin to be extra sensitive to certain stimuli. This coupled with hyperactivity in the cortex and the amygdala (both regions involved in sensory processing) don’t make for the happiest of bedfellows.

But what if the clothes that irritate us could in fact be used to manage autistic symptoms?

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Clothes are now being designed and adapted to cater for the different needs of autists. Companies are now producing  seamless socks and underwear, looser fitting clothes made from softer materials, and most interestingly, weighted and compression clothing.

Based on the research of the great Temple Grandin and her hugging machine, both weighted and compression clothing provide calming, deep pressure stimulation much like a soothing hug. The pressure switches off the sympathetic nervous system (fight or flight) to the parasympathetic nervous system (rest and digest), promoting the release of “feel good” neurotransmitters. Based on this, it’s thought that autists are better able to cope with sensory issues, hyperactivity, motor skills and sleeplessness when wearing sensory clothing.

It’s a really interesting premise- there’s even been an inflatable sensory scarf produced that’s designed to provide soothing pressure in addition to emitting calming aromas! Check it out:

https://www.wired.com/2015/08/odd-looking-clothing-designed-help-autistic-kids/

In reality however, the results are mixed. Scientific studies indicate that weighted and inflatable vests do not appear to be effective and are not clinically recommended, yet the personal testimonials of families across the globe beg to differ. One testimonial claimed that a child’s meltdowns went from 12 a day to having none in 3 years!

Either way, nothing ventured nothing gained, so if you think that sensory wear may be of benefit to you or a loved one with autism, why not give it a shot? 🙂

With the variety of sensory wear available, you’ll at the very least look fabulous! 😉

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Enjoy the weekend everyone! 😀

Aoife

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