Broader Autism phenotype

[emiliaofnewmoon]

A couple of friends have recently told me they are autistic. One is diagnosed, one self-diagnosed (but she lives in a country where diagnosis on the health care system is very unlikely). They have described some of how they feel and interact with the world, and I recognise a lot of myself in what they say. I've spent a bit of time researching ASD and concluded pretty quickly that I wouldn't meet the criteria, as in general I function ok. But I've been reading about Broader Autism Phenotype and I think I may well fit in that category.

I struggle with small talk and large groups, I feel a lot of my social interaction is a kind of performance, I feel a sense of not quite fitting in, I need time to myself, I like quiet and order and routines. I'm naturally organised but sometimes the thought of actually doing all the things is too overwhelming. When I don't get calm and predictability and routines then I really struggle, and usually at Easter and especially Christmas I have some kind of meltdown/shutdown.

I don't really have a question except just to wonder if anyone else has come to the same conclusion about themselves?

From what you describe you sound ASD, probably aspergers (now under asd umbrella).

Have you done the AQ?

https://novopsych.com.au/assessments/diagnosis/autism-spectrum-quotient/

You're describing me and I'm autistic with adhd.

Thanks, that's really interesting. Will investigate the AQ test when I have a chance. I've done a few of these sorts of things though and I usually come out either just under or just over the threshold of 'it might be worth looking into'. As I say, I can and do function. But I wrote this just after two weekends away in large groups when I was feeling extremely frazzled indeed. (Despite loving all the people at these weekends individually very genuinely .... altogether it was just all... too much.)

I just did the AQ and got 27/50 (compared to a cut off of 29/50).

Although I'm very high in two areas.

Thanks for the link. Really interesting.

I think if you’re concerned about it speak to your GP and get a referral done. You can then either wait out the NHS (4yrs) or go private for assessment which costs about 1k and can then be ratified by NHS (check with both private provider and NHS dept that all ok prior to paying).

Although you are doing ok and it isn’t impacting your life hugely at present, if you are autistic then - as undiagnosed- you are living without legal protection against discrimination, access to adjustments at work/in medical context, help at airports, financial support etc.

I would advise seeing a professional, there is no such thing as slightly autistic. You either are or aren’t. Every autistic person is an individual and there is a spectrum. It can be difficult to come to terms with the fact that you have the same condition and are as such lumped in the same category as people who are non-verbal or have severe difficulties. But that is the way it is now; no more high functioning autism or aspergers as it made low functioning people and their carers annoyed.

One thing I would check out as well is the masking assessment, it could be you are scoring borderline because you’ve learnt to mask very well and have adapted your behaviour to be more NT.

https://novopsych.com.au/assessments/formulation/camouflaging-autistic-traits-questionnaire-cat-q/

Thanks. I did the masking assessment and I scored 112 with a threshold of 100, which is interesting.

Thanks for all your advice. I'll think about assessment but the time and expense put me off. Also I'm not sure what would change. I don't need extra support at work or anything. Mostly what I need is an understanding husband which I luckily do have.

It’s likely you’ve masked so much it’s part of you now really. Don’t stress about it, if no urgency then nhs.

It is worth having; right now you have stability, routine, a job you know. Autism for a lot of people tends to flare up particularly when the unexpected happens - sudden bereavement, job loss, house move, new health diagnosis, holiday cancellation. Things like that. Even if you are in hospital or care in later life, your requirements are totally different to the norm.

I’ll not give anecdotes as scenarios you may experience could be different. I went for diagnosis after brushing it off for yrs as my DC was diagnosed and I saw how much better his life was for it.

Simple things like no more queues at airports, free carer tickets so we can go to events we like more often which alleviates stress, to having our backs covered with school/work/if we have to be seen medically.

See how you feel, and well done for having the bravery to post about it all. It’s very unnerving realising something like this about yourself may be afoot. Wishing you all the best.

Thanks. I think I may have given the wrong impression though. I wouldn't see myself as needing the kind of support you are talking about re airports etc. I'm fine at work. It's more at home that things unravel. I get overwhelmed by the chaos and noise of family life (including the way there's always something to take the kids to, something to arrange for school, etc, plus days out, extended family visits...) I really need quiet downtime to myself and I never get it. At Christmas (and to a lesser extent around close family members' birthdays) I just lose the plot over the constant noise and chaos and demands on my time. Before I had kids I was mostly fine (as an adult) as I was able to manage my time to make sure I could get the quiet time I needed, and I could keep the house as tidy as I liked. As a parent it's much harder.

I don't know, for the most part I think I must just be like any other tired parent. But then I think about how exhausted I feel at the end of a day with extended family, or how extreme my moods are around Christmas, and I wonder whether something else is going on. I thought the broader autism phenotype might be the explanation.

@emiliaofnewmoon From what you’ve described myself and @Mabelface have said you sound like us. Two diagnosed autistic people (I’m probably adhd too but haven’t got around to diagnosis).

There is a really nice article here about broader autism phenotype and a quiz - https://www.autismparentingmagazine.com/broad-autism-phenotype/
I would be on board with the academics who think BAP is a fabal - if they are going to lump us all together and do away with aspergers and all else there can be no room for BAP.

I still find it difficult in terms of my perception of self to be diagnosed with something that lands others with severe physical and mental difficulties. Though, many with “severe” autism also have comorbid learning disabilities and other problems… which then distorts what autism actually is to an outside viewer.

What you find with people who mask is they are fine and hold it together outwith the home - I see this with my child, while he has some difficulty, largely in school he is happy, then he comes home and everything he has been holding together falls apart. Same with me and sounds the same with you. Having the kids has taken away from your coping mechanism to recharge (on a scale much larger than most) at home.

Regarding the airports, I think you’ve missed why things like this are important. I have managed for the best part of 40 years at airports. I do not sway or scream or thrash about on the floor. I am capable of coping and can make my way through. What I did not realise, before we decided to use disability assistance for my son (because he gets stressed with queues, as does DH but that’s another story), is that coping with queuing, a lot of noise, fuss and sensory stimulus would burn me out…. I’d arrive at destination exhausted, regardless of journey length, and would have to rest or couldn’t really focus; I’d be zapped the first evening/day. I didn’t realise what was burning me out. So now I do avail of all the help available whatever that is, because it makes my life a lot better. Gutted I missed out on it my whole life.

Can empathise with the change that kids bring, I described labour and motherhood as traumatic when being assessed. And it is if you’re autistic, double if you have ND DC too. The pressure is on to socialise them and give them experiences beyond school during the week. Which is the exact opposite from what I personally need to function, the last thing I want is more people and stress, I want to recoup. But you can’t as a mother, then the general chaos and change that children bring on a daily basis, it’s exhausting.

Genuinely from what you’ve described, it isn’t “normal” to feel the level of burnout you’re going through. But I’m not an expert and I can’t assess you or know all the ins and outs of your day to day life and history.

I don’t think you’re going to be able to get any answers without seeing a professional to be honest.

This book was recommended to me and, along with DC diagnosis was my lightbulb moment prompting me to get assessed…. And finally be completely honest about all my eccentricities… It might help you read of other women’s experiences - women who for the record very often attain degrees, drive, travel, have careers, marriage, family, all the normal stuff… it’s just that for them attaining it and remaining happy and healthy is much more difficult! Takes strength and resilience.

Women and Girls with Autism Spectrum Disorder: Understanding Life Experiences from Early Childhood to Old Age, Sarah Hendrickx

@SensationalSusie Thanks so much for all the time you've taken to write that all out, I really appreciate it. I've got a lot on today but I will absorb it all and reply properly when I can.

@emiliaofnewmoon no worries, was no time at all. I’m still processing my diagnosis, after years of denial about it really. Am a long way from understanding how it impacts me fully.

Whether you are autistic, BAP, NT it doesn’t really matter. It doesn’t diminish the person you are, your achievements and friendships. What matters is that you have identified issues, particularly in your home life and you’re addressing it. Plenty of people going through similar, and support is available, it doesn’t diminish anything. Whatever the diagnosis you are still you.

Another recommendation for Sarah Hendrickx’ book here, it’s very readable and relatable.

Thanks everyone. @SensationalSusie I definitely recognise some of myself in what you say (childbirth and parenting being traumatic, travel being completely exhausting, holding everything together till I'm at home). I've googled Sarah Hendrickx now and watched one of her youtube videos - there's definitely some stuff in there that resonates (but also a lot that doesn't). One of my kids has ADHD and sometimes I feel like it's a terrible combination - I'm a bit oversensitive to noise, whereas they like to create it!

But OTOH I read another thread in the Chat section earlier ('Easter hols have destroyed me') which is full of mums who feel overwhelmed by the chaos of school holidays, and no-one seems to be suggesting they are ND, just having a typical parenting experience.

But then I think when you say "What matters is that you have identified issues, particularly in your home life and you’re addressing it." - this is it really. The issues are real, and I need to find ways to live with them. Being formally assessed may be one way forward, and I'll definitely consider it.

I’m undiagnosed but awaiting assessment (ASD and ADHD). I think the self-assessment/screening tests can be hard indeed to complete accurately (at least, I find them very hard!) For example, I always thought I was amazing with recognising other people’s facial expressions, and it wasn’t until my husband came to complete my paperwork that he told me I am actually shit at it and often get his wrong! And I genuinely hadn’t realised the extent to which I take things very literally, but apparently it often causes confusion/misunderstandings for him.

I have also “masked” certain traits for so long now that I didn’t even realise I was masking (in fact, I laughed at the idea initially!) until I really started to think about it and what real examples looked like for me. I also very much need support getting the hang of certain social situations (and have lots of specific examples) but have been in denial about this even to MYSELF because frankly it seemed so embarrassing!

Essentially, I think I was initially even answering the screening questions in a “masked” state! (“What is the correct, socially acceptable answer here?!”) rather than REALLY being honest with myself about things that make me anxious/cause me difficulty.

When I first took some of these tests I was always very borderline/just under the threshold, but now that I actually know what real examples look like for me (and have asked my husband what he thinks) I score much higher, clearly over the threshold. I’m not “cheating” to raise my scores - I just genuinely didn’t understand what some of the questions meant at first and what the answers looked like in terms of my own life. Although obviously I don’t know yet whether I will be diagnosed. At the very least I have strong sensory processing issues going on though!

What were you like as a child? There were clear “issues” with me but being the time it was of course I was just “very naughty”!

Could you find a private clinic to do an initial screening before going forward for full assessment (assuming they recommend that?) That way you could get an idea of whether you would realistically be likely to meet diagnostic thresholds….

Thanks, that's all so interesting. I've been wondering whether I'm in a similar boat. Eg at first when I heard of masking I thought "that sounds terrible, I'm glad I don't have to do that", but then I started to think about the act I put on around certain relatives etc who I don't feel I can be myself with, and how tiring I find that...

But then other times I think that parenting just IS exhausting and I'm just handling it particularly badly. Or that anxiety must be the problem.

I'm going through a difficult period for some reason and I need to do something to help myself, whether my underlying issue is ASD or general anxiety. I don't think it would be a terrible idea to do the initial screening so I'm going to think about that.

Oh and I was very well behaved as a child, but a very internally confused teenager. Lots of self harming and feeling I didn't know what I was doing socially. In retrospect my years aged 15 to 25 were really about learning how to operate socially. Since then I feel I'm basically fine (I've got a good social life for example) but recently I wonder whether I didn't lose something of myself along the way.

I was really well behaved too, straight As. Came off the rails in teens because I couldn’t cope with the additional social demands and unfortunately suffered assault which is quite common with ASD (reduced perception of danger/lack of theory of mind therefore vulnerable).

Looking at childhood ask yourself questions such as - did you have rigid play (playing the same way, setting out your barbies carefully for example and being fussed if anyone else wanted to move them or get involved in play), did you wander, did you have difficulty at any point with grasping new skills, were you bullied, did you have issues with clothing such as labels or textures, food issues?

If you’re thinking about masking consider things such as:

• Are your social connections long standing, for example do you have friendships maintained over decades or do you regularly take on new challenges and meet new people?

• Is your job/career pathway long-standing and in set routines in terms of people encountered, environment or things carried out daily?

• Is your relationship long standing from youth? How long have you been in the same house/attended the same Doctor/hairdresser etc. Do you prefer to holiday in places you know and stay in the same place?

Generally people with ASD will keep things as same as possible, they form associations with people often from childhood - early twenties and stick with them avoiding change because it is easier to interpret the responses of known people. Which branches out to work and romantic relations too.

Scripts will be more noticeable in unknown/less encountered situations like the relatives you’ve spoken of. But very often they become so much the fabric of life that you don’t realise you are doing it or mimicking NT people to get along.

What you’ve described is having long term control over your environment at home/work/socially and a supportive husband who has probably helped you smooth over the cracks. With the kids it throws it all up in the air, you have less energy to mask and cope overall as you are dealing with all their disruption and trying to meet their needs.

Again, going for an assessment is the only way of resolving whether it is autism or something like anxiety, or both.

But please take this on board - autism is not something to be fixed, it is a developmental difference. The main thing you need is acceptance post diagnosis and an understanding of your needs to be able to meet them better. But there is no way of rectifying yourself to be as a NT person would if you are autistic. It is like trying to ask a grasshopper to be a bee. It’s never going to happen and the grasshopper has to accept it will never fly… but can jump pretty well!

I was the perfect high achiever at school and an absolute nightmare at home! Extreme meltdowns with self harm, obsessive interests, sensory stuff, teenage eating disorder, the works…. A lot of what you have said certainly sounds familiar.

I’m wary of saying any more as I don’t have a diagnosis yet, but definitely very much agree that autism isn’t something to be fixed - for me, it would be incredibly liberating to understand the reasons for so many things (not just being “naughty” and so many other negative words) and to feel part of a similar group of people who actually understand, after feeling so different for so much of my life…. for me it is definitely very worth exploring for that alone. One of my children is also awaiting assessment so it will be really interesting to see the outcome for us both.

My understanding is that anxiety and autism can very much go together, so it isn’t necessarily a case of one or the other…. I really hope you manage to get the answers you are looking for!

Thanks Susie and Cosmo for your thoughts, I really appreciate it. I'm going to look into what's involved in a private assessment.

You've given me a lot to think about, I'm very grateful!

All the best to you @emiliaofnewmoon

Let us know how you get on.