6 ways to support an autistic spouse

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I have had my share of relationships, and over time I have found that being autistic in a relationship can cause a plethora of difficulties.  So instead of outlining all the problems, I thought it’d be nice to list 6 ways you can support your partner if they have autism (and, I’m assuming, you DON’T).

The list is not in any particular order– so what I’ve labeled 6, and what I’ve labelled 1 does not differ in terms of importance or helpfulness.

Please note, this list comes from the female autistic perspective. I hope it helps.

 

1. Respect: Assume competence

Yes, I am autistic… but that does not mean I am incapable of doing things for myself, or of communicating with others.  Autistics have a range of issues interacting with people, but hey– everyone has their problems! Many of us live independently, have jobs, have friends and do our own shopping.  Some of us have carers who help us achieve tasks, but even then, know that we are capable.

Autism is a spectrum, so we may have a classification/ diagnosis of “high functioning” or “low functioning” yet our difficulties vary in every single way you might think of.  We may totally excel in some areas and struggle in others.  We might be fabulous organizers, but have problems with self-care and hygiene. Or we may be very intellectual and succeed at work and school, but have overwhelming sensory issues. It’s all a spectrum. It’s like a spectrum within a spectrum.

What we need from our partner is respect and patience.  Get to know our triggers by asking us, or observing and then clarifying these with us: “You are so bright, babe, but I notice you get really overwhelmed by loud noises and changes in plans. Is that right?” — yes!  Now, you can help us by assuming we already know how to fix our problems and not try to fix us, or tell us how to do it “the right way”. You can support your autistic partner by letting them try to do it their own way, asking them how they manage and helping them enact that plan.  If your partner is struggling, ask them: “Would you like help with this?”, and we’ll tell you if we need it.

 

2. Patience: Give us time to process change

When we have been dating for a while, we’ll probably start making plans or decisions together.  Whether big decisions (like moving in together) or small decisions (like choosing a menu item) or setting plans (doing something together), autistics may need a bit more time to think everything through.  See, when plans change, or things involve change, we will need some time to process.  Transitions/ change can be hard for us, and so we need your patience. I’d say this is an executive functioning experience, where our brain just needs MORE TIME to consider all the options and implications of the change.

Changing Plans:  This is hard because it means all the ideas and thoughts we had focused on to create that plan are now different.  Sometimes we can be fine with change, but other times it can be really emotional for us. We may need to “de-stress” or do something active, to allow that change in plans rush over us so we can let it go, and be happier.

Decisions that lead to Change: Autistics can get overloaded with information or ideas about the future, because for us transitions are difficult.  A change in lifestyle is a huge change to our way of doing things. Decisions like this can agitate us, and we can get emotional. So, let us ask you the 100 questions we need to feel secure, and let us think longer about it all.

Please, please do not get down about having issues with your autistic partner when change is involved.  Just be patient with us. Do not be disheartened. If we love and care for each other, everything will work out.

 

3. Clarity: Help us understand what you meant

We really do want to understand you, but sometimes the words you use baffle us.  Sometimes the jokes you tell confuse us.  Sometimes we do not see that you are using sarcasm.  A lot of things will just go over our heads. But we want to communicate with you; we want to understand. Please help us understand you.

A way you can help us understand is to check-in. We will definitely ask you what you mean if it’s confusing, but you can also help us by following up a difficult phrase by saying, “Do you understand?”.  Yes, this can be patronizing, but if you know us (as you should in a relationship!), you’ll also know our specific difficulties.  Or, hey: you can ask us, “What sorts of phrases or instructions do you find hard to understand?” — we’ll tell you, and then your checking in will be super!

You can also use more visual cues, like drawing us a picture (yep, with a pencil!) or to exaggerate your facial expressions.  If you’re joking, make your face really smiley. You can also try using your hands to show us what you mean, or demonstrate an activity for us first, before giving us the verbal instructions.

I know it can be frustrating when you’re just trying to talk to your partner and it’s as if you need to repeat yourself several times, but as with any communication, it’s a 2-way street.  We are trying to understand you, and we really want to.  You are trying to understand us, and you really want to.  Let’s work together to communicate well!

 

4. Freedom: Let us have SPACE!

Do not suffocate me! I am not your puppy or your constant attention giver. I am not your reason for living. I am not your “everything”. I am not your personal life planner.  In fact, most autistics will fluctuate between being distant and being crazy affectionate; we live in extremes of black-white, and usually this is the dial where you’ll experience one or the other: distant OR crazy affectionate.

If we totally get affectionate, it’ll be maddening flood of LOVE… and then that flood will suddenly stop and we *will* pull away.  If this happens, please let us.  We’re not leaving you, or breaking up, or being indignant. We just need space.  If you ask us every day for your attention, we’ll become really agitated and unhappy.  We probably won’t tell you this: we’ll just feel the feelings and get lost in that overwhelm of being suffocated.

Freedom is so important to us.  I think this is because many autistics grew up with overbearing people who looked down on us, and those who demeaned us and our ability to do simple things.  Sure, we’re autistic… but that doesn’t mean we’re invalids! We think differently and do things differently, but we’re not dysfunctional or unable to live. Please, please give us space.

Help your autistic partner by encouraging them to take time for themselves.  Perhaps you might encourage them to do more of their special interest? If you’re living together, remind them to do their own activities, and have time without you around.  If you’re dating, do not organize lots of days in a row of dating, and again– remind your partner to self-care, and self-focus. Your relationship with be so much better for it.

 

5. Acceptance: Recognize our need to “STIM”

When I get overwhelmed, anxious or unsettled, I need to “stim”.  Stimming is a term which means ‘to stimulate senses’, and in medical jargon, it refers to partaking in repetitive stereotyped behaviours, like hand flapping, rocking/ swaying, knocking/ tapping, chewing, making sounds, touching/ squeezing, or fiddling.  For autistics this sort of activity actually calms us down, because it involves a very grounded  and experiential “doing” with our body.  All that pent us energy and emotion we feel gets sort of stuck inside us, and when we stim, it releases it.

I know, you might think it’s weird to stim, or that it looks like we’re bored or acting childish.  I know you might be disturbed about what others think when we stim… but it’s as important to us as sleep, eating, or using the bathroom.  Stimming is a necessity for autistics, and allowing us to stim is one of the most loving things you can do.

A way you can support and help your autistic partner is to get to know their preferred stimming objects.  For example, I have a teddy and a blanket which are my go-to’s when I’m sad or nervous.  When I am frustrated or agitated, I like to chew. I have a range of chewy toys and necklaces that help.  When I feel overwhelmed, I sway and rock, and sometimes bang myself against things (which can sometimes get destructive). I jiggle and hum when I’m thinking, and it’s more pronounced when I’m trying to find the words for things.  I tap objects in public and count things when I’m anxious. I also tap or rub my fingers together. You can help your partner by noticing their emotional states and either suggesting or retrieving their stim object, or just allowing them to do so without interference.  It’s also really nice when we’re out and you know that we don’t have our stim objects, to just have you squeeze our hand or let us know verbally: “everything is going to be okay”.

 

6. Kindness: Do not force us out of our comfort zones

Okay, now I want to say straight up that it’s okay to ask us to try new things, or give something a go… and if something is truly destructive in our lives, please let us know or support us to get help to change this…. but when I say “comfort zones”, what I mean is the routines, coping mechanisms, avoidance of certain foods, etc that your partner has established on their own.  These are the things that your autistic spouse has figured out work for them.  By forcing us to change the way we operate to do it “the right way” or “the normal way” (as you might deem it) is incredibly unkind and it also creates a whole range of discomfort in us.

Autistics set plans and routines and systems to protect themselves, and we often do mightily well as designing these intricate structures to solve our daily problems.

We DO NOT want to be “taught” how to be less autistic, or to behave in a manner you think is more normal.  The only time I think you can step in to “change” us, is if we’re doing something destructive, like self-harm stimming or poor self-care.  And in these cases, tread carefully.  Please do not tell us we’re being childish or wrong or bad.  Just offer an alternate idea on how to act, give us access to resources, or ask us to talk to our psychologist about our behaviours. For example: “Darling, I’ve noticed that whenever you’re stressed you hit your head against a wall.  I worry about how that makes you feel afterwards. I know you get those headaches. I get it that when you’re overwhelmed, you find that head banging calming, but I wonder if another activity might feel better for you. Perhaps you can look at some ideas with your therapist?” – that’s so loving!

Please give us kindness and let us be ourselves.  We do not want to be a carbon copy of what “normal” is perceived to be. Our systems work for us, so let us have our systems.

 


I hope that helps! Leave me some comments if you need more tips or just want to reflect on my post 🙂

Hey Girl: You Don’t Look Autistic!

Why autistic women don’t fit the DSM-5 criteria

woman behind green palm leaf

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Autism is a spectrum, so regardless of what you know, you’ll rarely see someone who exhibits exactly what you know. Perhaps you are unaware, but the main diagnostic criteria that is present in the DSM-5 pertains to the MALE characteristics. Much like most of medicine, a woman’s experience has been reduced to the idea that we are simply “little men”. See this article for more on that!

In females, autism presents differently.

*enter shocked face here*

A female’s gender role (i.e. how we are forced into social situations from a young age… aka gender stereotyping) leads to this ability to apply our attention to detail and observation skills to very good use. What do female autistics do from childhood? We copy. We mimic social cues and social interactions which makes us go ‘unseen’. We can read you and copy you, so our behaviour often does not reflect what you *think* you know about autism.

Now, I am sure someone wants to say, “but that’s just mirroring; every child does it”. Indeed. That is true for non-autistics. We, however, are aware that we do not fit in, even though we look like you; we know we’re copying you. It’s a cognitive thing. It’s NOT automatic. It’s thought-out, planned copying. And the interesting thing about female autism is that our level of copying you is actually often better than how you do it.

Growing up, females on the spectrum learn to fit in. We realize it’s a survival mechanism, so we survive. We hide our autistic traits, we “pretend” to be normal, for YOUR benefit. It is extremely taxing on our well-being, and many women on the spectrum (including me) experience anxiety and depression at times, trying to produce this “perfect social expression” so that you will accept us. We do it do be accepted, even though it hurts us.

Other than the mimicking, females on the spectrum struggle because our special interests are most commonly things that are strangely considered “normal” for our gender. Where a boy may fixate on trains (which is often stereotyped as inherently male), the appearance of such an interest is included as an example in the DSM. However, a girl with a passion for teddy bears, flowers, or sewing — this is considered ‘acceptable’…. even if her whole room is covered with those things, or if she seems obsessed with those things, it’s still okay. Somehow, being female means “it’s normal”. And, furthermore, when a female autistic child fixates on 1 person, making that person their special interest, no-one bats an eyelid — everyone just says, “aww she has a best friend”. If she is shy, that’s also acceptable. If she is overly energetic, that is “fun”; babylike, that is “cute”; a bookworm, that is “studious”… we constantly overlook the female experience with gendered thoughts!

Do I look autistic? Probably not. But then again, you are looking for male characteristics.

And one more thing — when ANY autistic person is completely involved in something they love, be that a hobby or a job, they will (like any human) excel. We, when doing what we are skilled at, qualified for, and enjoy; we will shine. We may seem unusually extrovert, fun, loud, engaging and/ or inspired. We may seem “without trouble”, and really — is that not a true reflection of any human in such a similar situation?

I excel in teaching and leading groups; reaching, inspiring, mentoring and supporting others. I shine where I am designing new products, being innovative, developing something, solving a problem, applying research, or simply “doing good”.

If you want to help autistics shine, let us demonstrate our talent and ability, and stop saying to us “you don’t look autistic”; better be humble and note your destructive bias. Better be kind and see our ‘humanness’ first.