Leading on from my post about periods and autism, this week I’d like to explore another taboo aspect of life on the spectrum- autism and the menopause.
Apologies once again to my male readers!
I may be too young to give a personal slant on this subject, but I’d like to create some visibility for the often overlooked adult female members of the spectrum. Public discussions surrounding autism are so often centered on childhood, potential issues for adult autists can be forgotten.
The change brings many difficult physical and emotional changes for women such as hot flashes, memory issues, mood swings, sexual dysfunction and issues with mental health. Now imagine how these changes might impact an autist who is already sensitive to change and temperature, sleep disturbances, struggles to manage their emotions and can be predisposed to mental health difficulties?
The autistic life is already a roller-coaster, but throw in the menopause and the cart may just fly off the tracks.
Our knowledge of autism and the menopause is very limited as autism as a diagnosis in itself is only emerging from it’s infancy. Some of the first women to be diagnosed with autism are only now reaching menopause, so there is little available research about their experiences of the change. Of the studies that do exist, experiences of menopause for autistic women vary, however, many reported worsening of autistic symptoms. Some women reported that it they found it extremely difficult to mask their struggles and suffered serious deterioration in their mental health.
We clearly need to start a conversation about menopause and autism so that we can properly develop tools and supports to help women navigate this challenging time of life.
For those of you going through the menopause, have a look at this blog post about “Menopautism” from journalist Jane Renton writing about her experiences of the change as an adult with Asperger’s syndrome:
You can also find some useful additional resources for managing the menopause here:
This week I’d like to talk about a topic that’s not discussed very often in conversations about autism- tics and tic syndromes.
So what exactly is a tic?
A tic is a sudden, repetitive muscle movement that can cause unexpected and often uncontrollable body movements or sounds. Affecting approximately 10-25% of autists, tics differ from stimming and other repetitive behaviours in that they are generally involuntary in nature such as abnormal blinking, head jerking, sniffing, throat clearing, or repeating phrases. Like autism, there is a spectrum of tic disorder’s, with Tourette Syndrome being the most common of these. Tic frequency and severity varies depending on activity levels, stress, boredom and even high energy emotions.
Thankfully my own experience of tics has not been severe, however, in times of serious stress I have been known to develop a bad eye twitch in my left eye. It was first brought on by the stress of my final school exams at 18, and has resurfaced a small handful of times since during particularly stressful work periods. Amazingly, no one has noticed this tic as it’s so mild, but it is a very odd sensation on the inside to feel your eyelid fluttering of it’s own accord. I was initially quite freaked out when it first started, but now I know that it just means I need to step back and manage my stress levels 🙂
But why are tics so common for autists?
Although they are often comorbid, as with many aspects of the spectrum, the research into this phenomenon is once again limited. Recent genetic research has shown that there may be an overlap where genes thought to contribute to autism can also cause Tourette syndrome which could explain why they often appear together. At the biochemical level, tics have been linked to imbalances in dopamine and other neurotransmitters, imbalances that have also been linked to autistic behaviours.
So are there any treatment options?
As the frequency and severity can vary with life’s changes, learning what your triggers are and how to manage or avoid them is one of the best approaches. Comprehensive Behavioral Intervention for Tics or CBIT (a form of CBT) is the favoured interventional approach, however, in some severe cases, medications can be used to help control tics.
Leading on from my previous post about autism and food, this week I’d like to focus specifically on diet and autism. There are a lot of articles floating around about the benefits of certain diets to manage autistic symptoms, but the research is tenuous and in some cases non-existent.
Ketogenic Diet: This is a high-fat, low-carb, adequate-protein diet that drives the body to burn fats faster than carbohydrates and is recommended in the treatment of some forms of epilepsy in children. Research has shown that in some cases, a modified version of the ketogenic diet led to improvement in repetitive behaviours and social communication in autists. The diet is thought to work by increasing the number of ketones in the brain (an energy source produced from fat breakdown when insulin levels are too low to convert glucose to energy) to produce more energy and offset biological stress and dysfunction in mitochondria (the energy producing cells of the body) which contributes to autistic behaviours.
Sugar-Free/Additive- Free Diets: It’s common knowledge that sugar can alter a child’s behaviour, but even more so for autists (there was a limit put on my childhood coke consumption to curb my hyperactivity for example 😛 ). It’s also thought that many autists are unable to tolerate a number of food additives such as aspartame, MSG and E-numbers. On a personal level, this one actually makes a lot of sense as I have had allergic reactions to certain E-numbers that have caused me to break out in hives in the past (not to mention how they used to make me super hyper!). While indeed lot’s of people reduce sugars and E-number’s to manage childhood behaviours, there’s little research on how sugars and additives impact autists.
Supplements: As it’s thought that autists may have impaired or abnormal biochemical and metabolic processes, vitamin supplementation could be used to improve this. While supplements can be beneficial, the research is inconclusive.
Gluten/Casein -Free Diet (GFCF): This is the most popular diet when it comes to autism treatment. Many people report improvements in autistic symptoms following the removal of gluten (a protein found in grains like wheat) and casein (a protein found in dairy) in their diet. It has been suggested that autists have a “leaky” gut that allows gluten and casein to leak into the bloodstream having an opioid effect on the brain and interfering with behaviours, but there is insufficient and inconclusive scientific evidence to support this. Many doctors have recently spoken out against these fad diets as they can be very bad for your health if you unnecessarily remove these foodstuffs. Gluten free diets for example can increase your risk of cardiac problems through decreased intake of essential wholegrain.
Cholesterol: Cholesterol is involved in modulating the oxytocin receptor and the serotonin 1-A receptor- neurotransmitters that are dysregulated in the autistic brain. Cholesterol deficits could interfere with the functioning of these receptors and contribute to autistic symptoms. Research has shown that cholesterol supplementation can help improve behaviours. I will explore this in more detail in a later post.
Phenols and Salicylates Exclusion: Some studies indicate that autistic behaviours could stem from impairment of certain enzymes involved in the metabolism of phenols and salicylates- antioxidants that are found in fruits, vegetables and nuts. While these compounds are healthy, in high levels these seem to increase levels of serotonin in the brain interfering with autistic behaviours, but there is no evidence to suggest that total avoidance of these compounds is beneficial.
Probiotics and Enzymes: There is currently no research to prove the benefits for probiotics and enzymes in the management of autism. However, as I have discussed above and in previous posts, autists are deficient in certain enzymes and bacteria which can interfere with behaviours, so supplementation could be useful.
Yeast Free Diets: As discussed in my previous post about thrush and autism, candida overgrowth in the gut is thought to contribute to autistic behaviours. The theory posits that removal of yeasts from the diet can improve behaviours, but there is no medical basis for improvement.
Fish Oils and Fatty Acids: Imbalances in omega-3’s and essential fatty acids has been implicated in a number of neurodevelopmental disorders and behavioural issues, so it stands to reason that supplementation could improve autistic symptoms. However, there is much more autism specific research required to confirm these benefits.
Continuing on from last week’s post about autism and puberty, this week I’d like to talk about autism and periods. I know, I’m about to alienate about half of my readers (sorry guys!), but this is a very important topic to cover for the often overlooked autistic female demographic.
Periods can be challenging for lot’s of women, however, for autists the experience can be somewhat of an ordeal. There can be a lot of overwhelming sensory issues where periods are concerned- new smells, sensations, and sensory issues related to the use of feminine hygiene products. Autists struggle greatly with change, and periods can be quite unpredictable over the course of our lives due to stress, hormonal changes, childbirth and eventually menopause (which I will discuss in a separate post at a later stage). As a result of this, female autists can develop a number of behavioural issues related to menstruation such as increased aggression and repetitive behaviours, not to mention changes in mood and mental health. Throw in a side of cramps and it’s no picnic!
In addition to the mental and behavioural toll, research has shown that periods are biologically much tougher on the autistic body. Studies have shown that women on the spectrum have higher levels of testosterone than their neurotypical peers (likely caused by dysfunction in the hypothalamus in the brain), leading to a number of menstrual related issues such as severe acne, hirsutism, irregular periods, polycystic ovary syndrome and dysmenorrhea. Premenstrual syndrome (PMS) is also highly prevalent in autistic women. Autists are also known to have high levels of inflammation in the body, which can further aggravate menstrual symptoms. Periods can even cause an increase in seizures in autists who also suffer from epilepsy due to hormonal fluctuations.
So what can you do to help a young autist through her period?
Educate them clearly about their changing bodies– autistic women can be particularly vulnerable, so they need to know exactly how their reproductive system works and the importance of consent. Use clear language that can not be misinterpreted or taken too literally. Understanding their body will also help them to better normalize menstruation so it is far less scary. As discussed in my last post, autistic women enter puberty much earlier than their peers, so it is essential that they are educated sooner rather than later about their changing bodies.
Check out autism friendly books about puberty/periods– there are a number of books available targeted at growing autists to help them navigate this challenging time. There are even books specifically about periods for young autistic women that may help.
Chat about different feminine hygiene options– as no two autists are the same, so no one option is better or worse when it comes to feminine hygiene products. There are far more options available these days to young women than just sanitary towels and tampons- they even make absorbent period underwear which could be very helpful for girls with sensory issues.
Setup a calendar/diary to track periods- the unpredictable nature of life and unexpected change can be particularly frustrating for autists. While periods can oftentimes be unpredictable and don’t always run on time, a calendar can nevertheless be very helpful to prepare an autist for upcoming periods and establish a routine. Knowing that an event is approaching can help to offset the scariness of it.
Break the taboo– reassure them that periods are a normal part of life and that there is nothing to be ashamed of. Periods may be overwhelming for autists, but they are by no means alone in their menstrual struggles.
Hope my female Earthlings at least enjoyed this week’s post! 😉
This week I’d like to talk about a frequently sidelined aspect of life on the spectrum- puberty. So often people focus on childhood autism we forget that autistic children will grow up and go through puberty just like everyone else.
Puberty is a challenging time for everyone, but often even more so for those on the autistic spectrum. Research is limited on pubescent autists, but some studies have suggested that behaviours can worsen in autists during this time, in particular, aggressive behaviours. The smallest of changes to routine can trigger meltdown’s in an autist, so imagine how this response is amplified when your entire body decides to change. You couldn’t pay me to go through puberty again- the raging hormones were a minefield (although there are day’s during this pandemic where I might consider it to travel back to a time when I had freedom 😛 )!
There can be a lot of sensory issues arising from the onset of puberty that can trigger further distress- body odours, sensory reactions to hygiene products, and my own personal hell, the sensory discomfort from wearing a bra. As I’ve discussed in previous posts, I went to war for years with my mother against wearing one as the sensation of it against my skin freaked me out and I was incredibly uncomfortable- but as I was un-diagnosed, this was passed off as just being awkward 😛
During puberty, socialising, an already challenging task for autists, becomes even more complicated. When you’re a child, everything is easier as kids haven’t developed a filter yet, but once those hormones kick in, conversations become more nuanced, boys and girls interact differently and your peers start to become aware of your mind blindness and excentricities. It can be quite a socially lonely time for autists.
So how can we navigate this difficult time in an autist’s life?
Talk openly about the facts of life– Talk them through the changes their body will experience in clear, concrete language. Don’t leave any room for confusion or misinterpretation so that they will be fully prepared and less thrown by the changes to come- there were certainly a few books that I read growing up where overly simplified language such as “a special hug” was used to describe sex that would only confuse and misinform the more literal autist
An important thing to know about puberty and autism is that it can have a much earlier onset in girls. Studies have shown that female autists tend to enter puberty and start menstruation on average 9 and a half months earlier than their peers, so girls need to be prepared and educated about the facts of life earlier than you might expect
Use visual tools– Sometimes words are not enough to create the correct mental picture for an autist. Illustrated books about puberty can be very useful here, and there are now many books specifically targeted at autists which can really help them to navigate this time
Discuss appropriate/inappropriate behaviours– don’t leave it at just the facts themselves. Autists will need to be taught about consent, sexual behaviours and inappropriate conversational topics just like anyone else. As female autists often mask their behaviours, it is especially important that they are taught about these things as they can be quite innocent and may be taken advantage of if not adequately prepared for adulthood
Sensory friendly clothing– For the young women out there, the market is now opening up to produce sensory friendly bras to help combat the issues of traditional brassieres. Bralette’s and lightweight sports bras may also be helpful alternatives
Normalise the experience– Reassure them that everyone goes through this, that it’s a normal part of growing up. Don’t attribute the entire experience to their autism
Be positive– Don’t assume things will be harder for your child as everyone is different. A positive attitude can go a long way to easing your child into the murky depths ahead
This week, I’d like to talk about the topic of autism and hair. Don’t worry, this isn’t going to be a weird post about people with autism having an excessive amount of hair or something!😂
Hair can however be a an issue for autists on a sensory level when it comes to getting a haircut and is also tied to many behavioural issues.
Thankfully in my case I have no issues with hair cuts (in fact I actively look forward to them!), however, for many autists, the simple act of sitting in the hairdressers chair can be a completely overwhelming experience. Sensitivities to touch can make a hair cut extremely difficult- hair washing and touching, head tilting and hair styling could be painful or overwhelming. Moreover, the noise of the scissors, clippers and styling equipment like hairdryers can equally trigger a meltdown. You can find some useful tips for navigating visits to the hairdressers here: https://www.autism.org.uk/about/family-life/everyday-life/hairdressers.aspx
In terms of behaviours, trichotillomania (TTM) has been linked to autism. Trichotillomania is a hair pulling disorder marked by a compulsive urge to pull out your own hair, often resulting in noticeable baldness. The condition can occur in response to stress and anxiety where the pulling action provides a calming sensation. MRI studies have shown that people with trichotillomania have more grey matter in their brains. As MRI’s of autists brains have also shown increased grey matter, this could explain why autists can tend towards this type of behaviour. Treatments for this behaviour include CBT and in some cases the anti-depressant clomipramine. In addition to trichotillomania, some autists with pica eat their hair known as trichophagia (also known as Rapunzel syndrome).
On a scientific level, hair has interestingly been used to identify autism in some patients! In a recent study, researchers noted that children with autism also had abnormal hair whorls (tufts of hair that were growing in the opposite direction to the rest) in addition to prominent foreheads and an asymmetrical face suggesting that these features could be used for diagnostic criteria. Makes me wonder about the shape of my own face/direction of my own hair growth! 😂
As the lockdown continues, this week I’d like to discuss the topic of working from home and autism.
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.
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… 😛
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.
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.
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.
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.
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 🙂