Autism in the Adult Shifting Autistic Characteristics Across The Lifespan: The Experience of Women
Join Dr. Regan for the third episode in this series about how autistic characteristics may shift across the lifespan. This episode focuses on the life seasons of women, including monthly cycles, pregnancy, and menopause. Tune in next time for the final episode in the series which will focus on autism and aging.
You may also enjoy the episode: Autism in Women
Published Articles for Additional Reading:
“Life is Much More Difficult to Manage During Periods”: Autistic Experiences of Menstruation
Prevalence of premenstrual syndrome in autism: a prospective observer-rated study
Exploratory Study of Childbearing Experiences of Women with Asperger Syndrome
‘When my autism broke’: A qualitative study spotlighting autistic voices on menopause
Dr. Regan's Resources
New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics
Book: Understanding Autism in Adults and Aging Adults, 2nd ed
Book: Understanding Autistic Behaviors
Autism in the Adult website homepage
Website Resources for Clinicians
Read the episode content:
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Hi and welcome back.
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This is Dr Theresa Regan,
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a neuropsychologist,
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mother of a teen on the spectrum author,
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speaker and your podcast host for autism in the adult.
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You are joining us for the 3rd episode in a four part series on variations in the characteristics of autism across the lifespan.
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Our first episode focused on just foundational knowledge about neurology and why we can expect neurologic characteristics to feel and be expressed with some variation across time and also across context.
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The second episode focused on adolescents as a season of the lifespan during which some of these variations can become really noticeable.
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There's chemical changes going on,
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physical development.
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A lot of increase in independence is requested of the person and also just the demands of social interaction,
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academic demands,
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all these things converging to sometimes make that perfect storm.
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This third episode is going to focus on women because there are really some pretty market hormone shifts that females experience across their lifespan and these can be accompanied by shifts in the experience of autism.
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So we want to focus specifically on that topic today.
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For the episode,
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we're going to review issues related to a woman's monthly cycle to pregnancy and post pregnancy issues and also to menopause.
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I'm going to include links to some articles in the show notes for those who want to read more and I'll let you know that many of the articles really focus on solely identifying that this area needs more study.
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So you may start to read thinking that it's going to tell you something.
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We don't know when really,
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it's just saying,
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gosh,
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there's not much out there.
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We really should be looking at this more in particular and then other studies focus on gathering comments and taking surveys of women on the spectrum and really listening to the experiences of autistic women,
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which I think is really informative and helpful.
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So we are going to kind of focus on that side of things for the majority of this episode.
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So we focused on adolescents in the second episode.
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But here we're going to focus specifically on the seasons and a female's lifespan beyond adolescence.
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So we are going to start with the topic of monthly cycles in particular.
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So these begin during adolescence,
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but they continue across much of the female's lifespan and they can impact individuals differently.
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So,
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across all human females,
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there is a lot of variation on how that cycle impacts them how much um consistency they experience in that area,
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what kinds of changes in their physical state,
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their emotional state they might experience.
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And this is really true for the autistic female as well.
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One overall theme in the comments of women who are on the spectrum is that many of the issues that can be a challenge for them on a day to day basis can really feel like more of a challenge just before and also during their cycle.
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Many of the characteristics specifically mentioned by women on the spectrum.
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Focus around sensory sensitivities emotional regulation.
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So that ability to feel calm and centered social communication.
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So figuring out what am I feeling,
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Finding words to express,
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that communicating with others in a social exchange and also feeling flexible in everyday situations.
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So,
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um I really prefer routine and now this unexpected barrier has happened and I also happened to be in that time of my cycle where dealing with these unexpected things feel so much harder.
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One woman said it can become much more overwhelming and harder to maintain control of the things that already take a lot of effort for us to keep on top of during our period.
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One woman said I have more meltdowns and worse meltdowns just before my period.
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And she also noted that understanding that this is what happens in her life makes those episodes in those periods of time more manageable.
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So they don't feel,
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she doesn't feel quite so thrown off now that she understands what to expect,
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although it is challenging.
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Some women on the spectrum reported that self injury behavior was more common before periods as well.
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Uh for some women's self injury includes um cutting or biting themselves,
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hitting their head on something,
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hitting their body.
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And there was a 2008 study which,
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you know,
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that's been a while ago and it used some diagnostic criteria that are out of date.
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And there weren't a lot of follow up studies in this regard,
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but I will link it in the show notes,
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but they found that if they looked at women who experienced Um greater than or equal to 30 difficulty with emotions and other things just prior to their periods and during their periods,
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that the prevalence of this significant shift And their ability to stay centered was 92% in the autism group and 11% in the control group,
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meaning that in their study again,
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this has not been replicated that I can see,
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but it does really um hold true as far as what we typically see in women,
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that this significantly more difficult experience of emotions.
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Um that's really much higher in the autism female group than in the neuro typical group who are experiencing monthly shifts.
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The hormone shift themselves can really heighten sensory experiences and they can make emotions more intense or even just come out easier.
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Like um I might be able to think or feel something inside typically,
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but now during this period of my cycle,
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it just really easily comes out and I feel like I don't have as much control over that gate of what I let out and what I keep in another layer seems to be that monthly cycles really increase the amount of sensory experiences and also often involve pain or discomfort.
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So the women on the spectrum is processing quite a bit more experience and discomfort than typical.
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So it's not only that hormones make the common things more disruptive,
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but also you're experiencing even more sensation than typical.
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This can increase the difficulty that women have during their periods with focusing,
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communicating,
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staying centered in their experiences.
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And one female on the spectrum said,
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you know,
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there's so much more coming at me and life is intense enough as it is,
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but every month I go through this time of even more intensity and that's really challenging for me to sort through.
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In addition to descriptions of the shifts and experience a subgroup of autistic females also expressed that they really wish they had more preparation for what the experience would be like.
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So for many on the spectrum who love routine or repetition,
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preparation detail,
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knowing what's going to happen ahead of time,
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you know,
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having as much information as possible related to monthly cycles would have felt more grounding to them.
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Mhm.
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The information they wanted more of included practical things like where do I get these supplies?
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What kinds of things do I need to buy also?
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How long is this expected to last every month?
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How to communicate their needs if they're at school and they need to leave to go to the restroom,
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you know,
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having some preparation as to what kinds of things they could do in different situations.
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Mhm.
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They also said that they wished they had understood that women experience variation um across time and also between women,
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you know that their best friend may have quite a different experience than they do and that's common.
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Um So their experience is likely to be somewhat different than their peers experience and that doesn't mean that something is wrong or that they need to feel anxious about that.
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The important thing is for them to notice what is typical for them and to communicate with family or doctors if they're typical experience shifts or it's disrupted steps in some way or changes.
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They also voiced that they wish they had understood that pain and discomfort was really normal.
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Sometimes they felt like it meant something that was really dangerous to them.
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Like maybe this was not supposed to be true,
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Maybe it meant that something was wrong,
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that they were dying,
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that they had a medical problem and also that emotional intensity and shifts were very common.
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So sometimes they had the basic physical information,
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but they really didn't understand that they can expect emotions to feel different during this period of time.
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Some individuals on the spectrum really struggle with health anxiety anyway and may quickly feel nervous if they think that they might be sick or if they don't know what to expect in their physical experience.
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Other women said it was quite a struggle because there was variation for a month to month.
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And so they didn't really know exactly what day they're cycle would start,
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how it would feel,
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how long it would last.
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And even though they had a sense of their typical rhythm,
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there's always,
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you know,
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some variation is this going to start today or tomorrow,
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How heavy is it going to be?
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Uh and so that may not feel like a big variation to neuro typical females,
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but for the autistic female that relies on repetition and detail and knowing what's going to happen.
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You know,
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sometimes that anxiety about when is this going to happen and what's it going to be like can be kind of a real struggle.
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The next season we'll touch on is the season of pregnancy and post pregnancy.
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And this could include breastfeeding.
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For women who experience this season,
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there are many significant hormone changes of course and a lot of physical changes and some women really struggle with feeling like this isn't my body anymore.
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And I have all this increased discomfort,
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I have sleep problems,
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fatigue,
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I'm nauseated,
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my appetite is different.
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I don't fit in my favorite comfortable clothes anymore.
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And so having so much different about their own physical experience.
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In addition to all the shifting hormones can really be impactful.
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Many neuro typical women experience sensory symptoms when they're pregnant.
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So a lot of times that involves increased smell sensitivity,
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like I cannot stand the smell of food or cologne or the pets have such a strong scent to them now.
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And sometimes that's most noticeable in the early months of pregnancy and then just kind of peters out for the neuro typical female,
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but for the autistic female who has sensory characteristics.
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Anyway,
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this can really be a time of heightened difficulty with a variety of census rather than just smell Some women report needing more deep pressure during pregnancy.
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Um,
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we've talked about deep pressure and other episodes that this is something that can be calming and grounding and centering for the person on the spectrum.
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And that is why some will use weighted blankets and other methods to get really some deep pressure that's calming.
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And so the women who report this feel like during their pregnancy,
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they noticed they needed more in order to feel calm and centered.
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Some talked about using things like massage.
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Other women talked about wrapping things around like their fingers,
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for example,
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or their hands.
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Some would have their pets lay on top of them.
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So whatever way they could get some extra pressure really helped them feel more grounded and calm nausea and sensitivity to food textures and sent maybe heightened.
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And many of the individuals on the spectrum already have some repetition and how they eat.
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So they may go on what I call food jags where,
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oh,
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I'm so into yogurt and salami and they'll eat that for a couple of months and then switch.
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And that's without pregnancy.
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And so when you add the pregnancy and there can be cravings,
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there can be nausea texture sensitivities that are even more significant.
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Sometimes you'll get this reliance on a few foods for nutrition and that's not necessarily a problem,
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but it may be something that they want to monitor and make sure they're getting enough nutrition during their pregnancy,
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emotions can be extra challenging to manage.
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Similar to what we discussed about monthly cycles.
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The impact of hormone changes on emotions during pregnancy may be really noticeable.
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And many individuals on the spectrum also experience sleep disturbance at the best of times.
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And the extra physical changes during pregnancy can increase problems resting and sleeping.
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So this decreased sleep may reduce resilience even more for things like staying centered,
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staying calm,
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paying attention,
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handling unexpected changes and socially communicating.
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This is what I'm experiencing.
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This is what I need,
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what do you need And also similar to monthly cycles,
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having to process so much more sensation for such a long period of time can also be noticeable to the autistic woman.
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So once the baby is born there are hormonal shifts again and this can be impacted by whether or not the mother chooses to breastfeed or use formula.
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And so awareness of how hormone shifts can impact this experience and the expression of autistic characteristics that can help the mother and her partner and her friends and her family at least have this context for what she is experiencing and then they can think um kind of intentionally about what she needs and how to be supportive.
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So they can think about Heywood,
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deep pressure help.
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Um and thinking in that way may really help this season go more smoothly so that she feels more resilient as we talked about in the previous episodes,
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Physical changes are often occurring at the same time of life that a lot of just life complexities land on our doorstep.
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And when we talk about pregnancy,
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we're of course talking about all the life changes that go with it,
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so changes in the physical environment,
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for example,
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of the house,
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there's extra furniture in your space,
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people are moving things around,
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you might have to get rid of things that actually you feel kind of attached to.
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Uh and sometimes we just have to get used to having more clutter around and this,
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you know,
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maybe stressful for the person that likes their physical environment to be a certain way.
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Some autistics really depend on their physical environment to help them feel grounded and calm.
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Um there's a subset of people on the spectrum,
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for example,
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that really love a visually simple space.
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Other people really love to have objects in certain places or facing a certain way.
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So having a shift in the environment can impact this sense of grounded Nous.
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Women may report feeling like they have less control over the environment and therefore they may need to rely more on other strategies to find that peaceful place in their own spirit preparing for baby often involves more social contact.
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And so people may come up to her and want to touch her or talk to her about their own birth experiences.
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They might ask questions about her pregnancy.
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So there can be less personal space in a social context and this can feel demanding and draining to the autistic woman who's already really managing a lot of physical and environmental changes.
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So this woman may want to decide ahead of time how much social context she wants,
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Does she want a baby shower?
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Does she want family to visit and stay over when the baby's born?
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She may want to practice comments that she can make when strangers want to ask her about the pregnancy in order to just kind of create a safe space for herself without feeling like people are kind of coming into her space more often than she can really handle and and balance.
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Some women on the spectrum realize that they have really high standards for themselves and they don't want to take risks or fail or make mistakes.
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Inattention to detail may be very important to them and getting this right.
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And in that sense,
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pregnancy and childbirth and parenting may feel really daunting because it's really difficult to get through that process without realizing that you don't have as much control as you wish you did.
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And it feels like a big risk in some ways,
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like I can influence the situation,
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but I don't have all the answers and nobody else does either.
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And that can kind of increase anxiety.
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And so having this self awareness if this is your um kind of rhythm,
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your internal rhythm that you try to stay on top of so many details and facts so you can get everything right.
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Um you may need to process how can you manage that during this really complex life change of pregnancy and becoming apparent.
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Some described feeling guilty when there were problems during their pregnancy.
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So if they went to the doctor in their blood pressure was high or their sugars were high or there was something that the doctor wanted to monitor more.
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They kind of felt like they had failed their doctor's appointment and you know,
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having this awareness of what the struggle is about and how to process that can really help um adjust to not having all the answers and not being able to get everything right and avoid risk.
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Many women describe to that pregnancy birth plans and breastfeeding and also parenting issues became their special interest and this isn't necessarily a bad thing at all.
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They become very informed,
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they have strong opinions and things they would like to choose in their parenting um in a really intentional way,
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but some also say they wish they had been more aware that this is what was happening so that when they hit obstacles or rough spots and they felt out of control um they could also focus on balance.
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Like I have some other interests.
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I have um ways of restoring myself,
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I have ways of grounding myself and this is a special interest that's okay,
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but I also want to seek balance and um and what I'm doing so that when these difficult,
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unexpected things happen,
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I can still hold the course and be okay.
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Also the increased chaos in the home after baby is born,
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that really needs no explanation.
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There are so many more demands on the parent.
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They have less rest time,
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there's a lot more sensory input.
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So really close attention to having strategies ahead of time and as you go along,
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adjusting strategies so that you know what you need,
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whether that's pressure or quiet time or um rest breaks and all of these things to really do this marathon of mothering rather than trying to sprint through doing everything perfectly all the time again,
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this is really a common experience for any woman who's gone through that season and it just maybe more so for the autistic female that they really want to figure out how to add balance and restorative kinds of activities in their life as we move on to menopause.
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Um,
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this again,
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is a season of a lot of hormonal shifting and some women report that they really did well,
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understanding their autistic characteristics,
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using their strengths to get ahead at work to get promoted to accomplish life goals.
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And they found compatible partners and they really got into this nice groove with um,
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a life that fit them and it fit their nervous system and all of a sudden menopause happens and there just was a lot of shift that they didn't expect.
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Um one woman described that she felt that her autism broke during menopause,
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that it kind of broke through,
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whereas she didn't really have to think about it a lot during other Seasons of Life,
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A quote from a woman in menopause said during menopause,
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I was on three meltdowns a week at times and my meltdowns were of the nature that people would call a basket case,
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I'd strip down to my underwear sometimes during a meltdown at work,
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so that feeling that my body,
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my nervous system,
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my my whole system is so overwhelmed that I need to just strip down.
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So I'm not getting so much sensory input,
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I'm not getting input that feels like it just takes me over the edge of feeling upset.
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Um and so I love these quotes because I feel like it really helps us here,
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the humanity of that,
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and we can probably all relate in certain areas or certain times of our life where we have felt um just overwhelmed by change or by things that hit us harder than we thought.
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Um So here again,
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we're talking about similarities with the report of many women during menopause,
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but it's really crossed with these common autistic characteristics that I feel more anxiety that I feel more sensory difficulty that I have more meltdowns.
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An autistic woman may feel that her attention to detail in getting things right,
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worked for her and so many aspects of life,
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but that during menopause,
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her hormone shifts have really led to this increased anxiety.
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This feeling of being overwhelmed by the demands of the environment.
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And she may feel like she's now getting stuck on detail rather than using that as a real gift.
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That helps her move forward with projects.
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So getting stuck to the point that it really makes it hard to move on with things to make decisions to feel calm.
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Women also report that changes in their physical form again,
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that our body really changes without our permission and there are weight changes and wrinkles and sometimes the ways that we use to exercise or have fun and do our leisure time.
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Sometimes we just can't physically engage in the same things.
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Sleep disturbance is common in menopause and of course for the autistic who already had sleep disturbance.
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That can be really challenging.
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And the emotional symptoms can all impact how this season feels the physical and hormonal changes impact many aspects of the autistic experience itself.
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And similar to other portions of our episodes,
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we need to look also at the life season changes as well.
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So life complexity,
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environmental changes.
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Some women are facing the need to downsize,
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for example,
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during menopause,
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maybe they're empty nesters,
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maybe they've gone through the loss of a partner,
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a divorce or the death of a spouse and they may be thinking about getting rid of their um possessions enough that they're downsizing into a new space.
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How will this new space feel?
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That can be really hard.
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Some women on the spectrum are going to be very attached to things in the environment in a way that feels stronger than a neuro typical may feel.
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And doing all this in the midst of physical changes can be really difficult.
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They may also be caring for ill or aging parents or have experienced loss in other aspects of their life.
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So as we said,
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these physical changes that occur in menopause also coincide with shifts and life experience and all of these things together can lead to some pretty big changes and how autism is experienced and expressed,
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A woman may feel like she needs to figure out how her system works again from the beginning.
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Like I used to have this figured out,
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I had come to understand myself and what I need,
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but now things have changed and I really have to figure this out again.
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Finally,
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it is important to recall that these are generalizations.
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So I I really want to emphasize that,
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I'm not saying that everything falls apart in certain seasons of hormonal shift,
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there's so much generalization,
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but I think that when the autistic woman goes through a season of life and the things that she thought she understood about herself really seemed to shift,
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I think it is helpful to know the context for that that has a context within the nervous system,
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within the autistic experience,
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within all these life changes and that in itself can be really helpful.
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And also,
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I think it allows us to be intentional about what do I need now?
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I didn't used to need this,
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but I need this now.
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And so I'm prepared to shift.
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I understand that it's not that I figure myself out for a lifetime and I need the same things all the time.
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It's that I figure things out for a season and I am prepared to shift when that changes.
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I hope this gives a nice overview of some of the physical and life season changes that impact autistic women.
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And in our final episode of the series,
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coming up next time,
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we're going to talk about shifts that have to do with aging.
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So we're going to talk about the aging,
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brain and body.
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We're going to talk about retirement and other aspects of just aging within the context of autism.
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I hope you join us for that next episode as we round out this series.