Blog

Late Autism Diagnosis

Greetings Earthlings! ๐Ÿ˜€

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.

diagnosis

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?

e73ef8047d469e08e14eadd9922c4ec3dbc98d5d31133708657f3ee55a373b83.0

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.ย 

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!๐Ÿ˜‚) 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! ๐Ÿ˜› 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?

e61154a27280f6d8a7d8e4ae7e9ffa867c791ea3a84ca5028f1d1b3a10eec150.0

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 ๐Ÿค—

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 ๐Ÿ™‚

360caa9d0ff28163fb1a7597ec015198bed20c910faa8c89c01802c1027bab2d.0

Hope you enjoyed this post dear Earthlings! ๐Ÿ™‚

Stay safe!

Aoife

Autism and Grief

Greetings Earthlings! ๐Ÿ™‚

As my family and I have recently experienced the loss of my dog Jasper (the vet found a large mass on his spleen and he had to be put to sleep ๐Ÿ˜ฅ ), this week I’d like to talk about autism and grief.

jasper

Everyone deals with grief differently, it’s an individual experience. For autists however, as with many aspects of our lives, grief can be a lot harder to navigate. Emotional processing is at the core of the experience, and for an autist that struggles with emotional regulation, grief can be all the more overwhelming. Meltdowns, shutdowns, violent outbursts- we feel our emotions so much more intensely than neurotypicals that grief can truly bring us to our knees.

In my experience, grief doesn’t even have to be associated with death- grief for the loss of a friendship, a job, a prized toy can be just as tough to deal with. I’ve whiled away many an hour curled up in a ball grieving lost friendships or missed opportunities, especially where specialist interests are concerned (you wouldn’t believe how many times I’ve cried my eyes out over forgetting to press the record button on some Harry Potter TV special back in the days before high speed internet/catch up TV services!๐Ÿ˜‚).

61d61494816b951d048201beba94296cad3c1a2b83dd0bb23bf9fadd6ef0ef5d.0

Grief is never easy, but here are some of my top tips which I’ve found helpful when coping with grief:

Express your feelings– one of the worst things that I did after the death of my dog Oscar 9 years ago was to bottle it all up. I knew that he was dying with cancer 2 weeks before he was put to sleep, so logically I thought that I had to move on straight away. I’d had time to prepare so once he was gone, I felt like I was expected to go back to normal straight away. I felt like I had shed so many tears in his dying weeks that it wasn’t “socially acceptable” to mourn him any more. So I buried my tears and feelings and about a month later I imploded- I even snuck out of the house in the middle of the night to cry by his grave ๐Ÿ™ˆ Don’t be like me, lance that boil; don’t let it fester!

Take comfort in music– I know I often come back to this one, but for me music truly helps to process my emotions. I can’t always identify or verbalise how I’m feeling, but music often acts like some sort of mental key to help me get there.

Write it out- Again, I know I proffer this offering a lot, but like music, writing soothes the mind. If you can put words to what you’re feeling at all, it will really help you to make sense of your grief, and help you to move forwards.

Let your tears fall– when you cry as often as I do, the phrase “stop crying” is never far from the lips of those around me. But crying is the needle to my boil- my brain needs it to drain my mind of the neuroelectrical storm of overwhelming emotion. My mind hits emotional capacity and tears are the only way to drain it. In a society of stiff upper lippers it can be hard to feel like you’re allowed to cry, but if you need to, let them roll. If there’s one thing I’ve learned as I’ve gotten older it’s that there’s no point in holding them in- like a blocked toilet they’ll resurface eventually (and when they do, it won’t be pretty!)

e7414f14d710755ac39ce5427bd8c7f89ab67211772d5a42f70df2b27d03827d.0

The most important thing to remember about grief is that it does get easier. Maybe not today or tomorrow, but eventually- there is no true timeline. Bit by bit, the pain will get easier. ๐Ÿค—

Hope you enjoyed this post dear Earthlings and that you’re all keeping safe and sane(ish) during this difficult time! ๐Ÿ™‚

Aoife

Autism and Working from Home

Greetings Earthlings! ๐Ÿ˜€

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

9823c004db3e2122fb1ad349f4eb623e1bc462a1d39e724e95ad5df4d7540c0f.0

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.

bitmoji-20191003080720

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 ๐Ÿ˜‰

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… ๐Ÿ˜›

2d1b7771f914e7301a245a0ce015ae40c1ac196ffff4a87d09299e8852c7088b.0

Hope you enjoyed this post dear Earthlings!

Enjoy the weekend! ๐Ÿ™‚

Aoife

Happy Easter 2020!

Greetings Earthlings! ๐Ÿ˜€

In the midst of these trying times, I’d just like to send you all a quick Easter greeting for 2020! ๐Ÿ™‚

f5560dd1e44dcd6e84ec82ad129e271869d04c4181db11b7fa3b2ffc0130b9f4.0

I wish I could say that my Easter plans will look like this, however, the reality will unfortunately look a lot more like so:

isolation

Wishing you all a very Happy Easter wherever you are, and hoping that you’re all doing OK during this crisis.

Sending my virtual love to all my Earthlings!

b8aefdc00d8097e4c636dc51b4d5473548aba7811897a3aa5142296d9740cfa2.0

Aoife

Autism on Screen- Scrubs

Greetings from lock-down dear Earthlings! ๐Ÿ™‚

As I try to fill my hours in these dark days, like many people, I’ve been spending more time working my way through my TV/film backlog. In the midst of this, I’ve come across an old episode of the acclaimed medical comedy Scrubs (Season 4 Episode 18) which featured an autistic child.

Binge Watchin' TV Review: Scrubs

In this episode, Dr. Cox’s highly competitive childhood friend Ron comes to town with his son and arranges a play date. During the course of this play date, Dr Cox is dismayed to find that Ron’s son Nathan is far superior in his block building skills to his son Jack. Taking this, Nathan’s lack of eye contact and avoidance of touch/hugs into account, Dr. Cox realizes that Nathan is likely autistic.

unnamed

While this episode is not the most accurate portrayal of autism with such stereotyped traits (the character’s on screen appearance is only fleeting so it would have been difficult to show a true representation), I wanted to talk about the episode nonetheless for the way that Dr. Cox handled the situation.

The episode did not focus in on the medical drama or exaggerated autistic traits, but kept it simple yet effective in the sensitive delivery of the suspected diagnosis from one friend to another. There was also a greater focus on the fact that early diagnosis is a good thing to give autists the best chance to thrive- a refreshing change as so often media portrayals stick with the negatives.

Here’s a clip from this poignant scene:

 

In reality, John C. McGinley (who plays Dr. Cox) is father to a child with Down Syndrome and is an active ambassador for this cause, playing an integral part in the Special Olympics “R-word: Spread The Word, To End The Word” campaign in recent years. As such, it appears that he drew from his own experiences of special needs in his delivery here which really added to the authenticity and tenderness of this moment of true friendship.

Hope you enjoyed this post dear Earthlings!

Stay safe!

Aoife

Autism and COVID-19

Greetings Earthlings! ๐Ÿ˜€

bubble

As I am writing to you this week from an Ireland on near total lock down, I’d like to talk to you about the COVID-19 pandemic and how this affects the autistic community. While many autists will be content in isolation, concerns over contracting the virus, disruption to routine and difficulty obtaining preferred foods due to panic shopping can make this time quite stressful.

coronavirus

Here are some of my top tips for navigating the pandemic on the spectrum:

Try to remain calm– I know, easier said than done for the anxious and over-thinkers, but panicking will solve nothing, and will trigger meltdowns and shutdowns. If you’re struggling with your emotions surrounding the pandemic, try to write them down or talk about them with your family. A problem shared is a problem halved.

Stay positive- I know it’s hard to see the sun through all the cancellations (Eurovision and my recent non-holiday were particularly heavy blows for me), and the rising number of cases, but this shall pass. Try to see the positives of our situation- more time for family, new hobbies, a break from the office the environmental impact of restricted movements etc.

Know the facts– do not allow yourself to get distracted by fake news, this will only make things harder. If you must read about the virus, educate yourself using the official information released by the World Health Organization. Knowledge is power.

Turn off the news/take a break from social media– if you’re the kind of person who get’s easily weighed down by all the fake news and mass hysteria on our airwaves at the moment, just take a step back from the media. Limit and reduce your consumption- perhaps taking a break from social media might help to drown out the panicked buzzing all around you?

Keep busy– this is crucial for the easily bored autistic mind. Cabin fever comes on all too quickly when you’re not adequately entertained, so try to keep yourself occupied. Indulge your specialist interests and hobbies (why not even take up a new one?) take plenty of walks (if you can), sort out all of the items you’ve been procrastinating on your to-do list etc. Find a way to keep both body and mind distracted and the time will fly by!

And most importantly, stick to the following rules for preventing the spread of the virus:

 

 

I know it seems like the world is spinning out of control, but we need to do our best to stay calm to get through this time. We all have to do our bit to combat the virus- sacrificing our routines for a few weeks may seem difficult, but it’s the only way to lock this thing down and stop the spread.

Stay safe everyone! ๐Ÿ™‚

Aoife

My Autistic Fight Song- Rosie Weldon

Greetings Earthlings! ๐Ÿ˜€

As many of you may know, I love to read, and so I was delighted to be offered the opportunity to read an advanced copy of ‘My Autistic Fight Song‘ by Rosie Weldon.

Image result for rosie weldon

This enticing memoir charts Rosie’s journey through higher education, her autism diagnosis and her struggles in the workplace as she strived to achieve her dream of becoming an accountant.

You can find a trailer for the book here on Rosie’s Youtube Channel:

 

So what did I make of the book?

Reading this book was a very interesting experience for me as someone who has yet to engage with another female autist in the flesh. I’ve read many abridged accounts and watched many interviews with other female autists, but this was the first time I really was given a raw insight into the mind of someone other than myself.

In some ways I could have been reading my own story. My experience of autism has been significantly milder, but yet many of our experiences align. Both diagnosed in our twenties, both encountered challenges with social anxiety, both found comfort in music, Harry Potter and the confines of a secluded bathroom stall. It was fascinating to see into Rosie’s thought process, her thinking so often mimicking my own- growing up, it would have been nice to have come across this book to let me know that I wasn’t alone, that I wasn’t so different after all.

Autistic people and eating

Perhaps most interesting was Rosie’s experiences of the workplace. As I have discussed previously, only a small percentage of autists find full time employment. Rosie’s perseverance in the face of adversity in the workplace was inspiring. She was fiercely determined not to be another statistic, and this determination made her dream of being an accountant a reality.

It was also most heartening to see the support that Rosie received from her employers along the way- they did not see her autism as a challenge and instead found ways to work within her comfort zone, such as moving noisy machines to a different room. Having struggled in the workplace myself in a role where I was not adequately supported, I’m glad to see that not all employers see autism as a burden.

For anyone looking for an insight into the mind of a female autist, “My Autistic Fight Song” is the perfect bedtime read ๐Ÿ™‚

Rosie also has her own blog where she talks about autism which you can check out here: https://www.rosieweldon.com/

If you’d like to read ‘My Autistic Fight Song‘, the book will be available to buy from April 1st (conveniently timed for Autism Awareness Month) ๐Ÿ™‚

226d5b24f10442a45bd7c8e305b90729d5ea301565ee4ae633cb6cfe2401cd08.0

Hope you enjoyed this post dear Earthlings! ๐Ÿ˜€

Enjoy the weekend!

Aoife

Autism and Coping with Disappointment

Greetings Earthlings! ๐Ÿ™‚

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.

coronavirus

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.

6a46b3530e4f46c0c45d8f1ac275690cd47ae51dd74d2d49ff43577035c5548e.0

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.

 

7573e25d7b54fc8c23854fd8a17ec894ff946b709261d2bebbed97ab0664a9a9.0

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! ๐Ÿ™‚

Enjoy the weekend!

Aoife

Autism and Self Injurious Behaviors (SIBs)

Greetings Earthlings! ๐Ÿ™‚

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.

sibs

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 ๐ŸŽธ), cutting etc.

So what triggers this sort of behaviour in autists?

bitmoji522001614

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

 

bitmoji355578372

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! ๐Ÿ˜€

Enjoy the weekend!

Aoife

Autism on Screen- X+Y

Greetings Earthlings! ๐Ÿ˜€

This week I’d like to take a look at the depiction of autism in the semi-biographical drama film ‘X+Y‘ (also known as ‘A Brilliant Young Mind‘ in some countries) starring Asa Butterfield, Rafe Spall and Sally Hawkins.

In case (like me) you have never heard of it, the film follows the story of Nathan, an autist with genius level skill in mathematics as he trains for and competes in the International Mathematical Olympiad (IMO). The interesting thing about this story is that it is based on the experiences of Maths prodigy Daniel Lightwing, who won a silver medal in the IMO back in 2006, and shows us how he found love, friendship and a sense of belonging through Maths.

You can see a trailer for the film here:

So given that the film has it’s basis in fact, how did it fare in it’s depiction of autism?

For starters, I found it hard to take the film seriously knowing from my research that for a film based on a true story, there were a number ofย  inaccuracies. Nathan was diagnosed with autism at a young age whereas Daniel was a teenager; his mentor was a woman but portrayed by a man in the film; Nathan’s father is killed off whereas Daniel’s is very much living, and perhaps the biggest difference being *Spoiler alert* that Nathan ran out of the IMO exam, whereas Daniel claimed the silver medal!

In terms of the portrayal of autism, I found that in general Asa Butterfield’s portrayal of autism was fairly stereotyped (poor eye contact, literal thinking, particular food preferences, problems with social skills etc.), however in reading about Daniel/watching his teenage self being interviewed, it’s hard to argue with the portrayal. Got to admit, Asa does look quite like him!

Image result for daniel lightwing"

One thing that I found particularly interesting was when another autistic character began to self harm after he did not make it onto the IMO team. This darker side of autism is often overlooked in film. We see the stereotyped struggles such as eye contact, social and sensory problems, however we rarely see an autists struggles with mental health. As I’ve discussed previously, mental health issues are very common among autists. Self injurious behaviours such as cutting can be particularly common, making the depiction of this trait in the film all the more poignant.

 

Image result for x+y"

At the end of the day, the real opinion that matters here is Daniel’s. When asked about the film Daniel was quoted as saying “I cried the first three times I watched it. It says things I was feeling but could not express.”

You can read more about Daniel’s experiences of Asperger’s here:

https://www.standard.co.uk/lifestyle/london-life/with-asperger-s-you-put-on-a-mask-to-pretend-you-re-normal-daniel-lightwing-on-how-the-film-of-his-10119675.html

All in all, ‘X+Y’ is worth a watch, perhaps not the most informative film about autism, but an interesting story nonetheless.

Hope you enjoyed this post dear Earthlings! ๐Ÿ˜€

Have a good weekend!

Aoife

Blog at WordPress.com.

Up ↑