To think I might be autistic but masking all my life?

[21degreescooler]

My DD (9) has been diagnosed as autistic. I had never considered it before but she was referred after ADHD diagnosis.

I was diagnosed privately with ADHD but never tested for autism.

I was very surprised by my DD’s diagnosis as she never seemed autistic to me. She is similar to me at that age. She is outgoing and sociable, but struggles with transitions, regulating emotions and sometimes with social skills ( it is mild, but it’s more like not picking up more subtle social cues- interrupting, not appreciating when people have had enough of a certain activity, or when her behaviour is becoming too much)

I now wonder if I’m autistic too? I’m sociable, but think have learned social skills later than others, sometimes struggled to make friends ( by that I mean, knowing HOW to make friends in new situations- I found university difficult at first.)
I do have lots of friends now, but I feel it took a long time to learn how to make them.

i don’t think anyone would consider me autistic- im warm and friendly, empathetic, and think I have learned to read social cues.

but sometimes I have noticed people have taken a real aversion to me and I’m not sure why ( it’s rare, but enough for me to notice they’ve taken a dislike, but I’ve never known why)

when I was younger, I was quirky and good fun. Also a bit shy and socially awkward. I used to actively study people in social situations to see how to behave at parties - does anyone NT do this?

I still dread social functions at work, but have learned how to deal with them. Now people would probably think I’m a good networker and at ease in social situations.

I’ve struggled to understand my shyness- I feel awkward in some situations but at ease in others. I’m very confident speaking at a conference where I get to talk about my area of expertise, but shy and nervous in meetings where I’m put on the spot.

all of this could be NT, but am I BU to think maybe this is mild autism?

to understand myself better. It’s a common desire of everyone ( NT and ND) to understand why we behave in the way we do. Why would I be any different?

also, for the many reasons already discussed by myself and pps.

i didn’t say I didn’t want therapy. Seeing a therapist would help me a lot- but ill be paying for it as I usually do ( anxiety and depression).

im on medication for ADHD. If there was medication for Autism and it would help, id take it but there isn’t any.

Because people don’t go for an assessment without having a number of difficulties already.

If (as you say) you're not struggling then you'd likely not get a diagnosis anyway.

In terms of resources- what resources?
There's practically no support out there for struggling but otherwise high-functioning autistic adults.

However, a diagnosis can help you understand why you're struggling and how you can adapt your life to make things easier if necessary.

Op given your family history and diagnosis of ADHD it is very possible that you are autistic. It's also quite common for those medicated for ADHD to recognise more AsD symptoms. This happens because the medication 'quietens' the ADhd symptoms and the ASd symptoms become more apparent because the brain has more time to focus on them. Frequently things like rigidity, anxiety, rituals and social differences become more obvious. ASD in women/ girls is still very misunderstood.

I work in an ND assessment team, and frequently get information from schools (mostly in relation to girls) where they say there are no difficulties. This is despite a strong neuro history, scoring on the ADOS and self report. In these situations we send a clinician to do a class observation and more often than not a quiet, well behaved child is seen, but when you watch closely they are like a dear in headlights, on the periphery of interactions, a perfectionist nature, copying peers, preferring 1:1 interactions, can't cope with conflict, pulling/ fiddling with fingers under the table (out of sight of teacher) etc. so generally good at masking to an untrained eye. Again more often than not the child has meltdowns after school after masking all day.

I've just paid for DD to have an assessment. She got to her 3rd year in double law degree and the wheels fell off. She got a same day adult assessment, not cheap at over £900 though.

Yes I do.

Oh ffs! I thought we didn’t need labels!

it’s all mumsnet right?

should I have put the usual ‘posting for traffic’?

was actually just the first thing that came up and I posted without noticing I hadn’t chosen the category. That enough explanation, Sherlock?

I was diagnosed as autistic last year, aged 45. In hindsight, I didn’t anticipate how many emotions it would stir up - since I voluntarily put myself through the process. I compared it to the grieving process. But I am very glad I did it as having that confirmation means I know I’m not weird, weak, not good enough, etc, as I’ve believed I am all my life. I am autistic and my brain works differently to most people. Like you, I can be sociable, friendly, empathetic, etc. I have spent a lot of my life masking, which is exhausting, and I still find it hard not to mask. It’s a life long habit after all! If you believe you may be autistic, you have the ability to seek a diagnosis and you feel it would help you to know either way - do it.

But that doesn't necessarily mean that autism is the correct diagnosis. The concern is that other explanations / conditions could be missed.

Eg as a mundane physical example. I have a genuinely very problematic knee. Was referred to muscular skeletal for scans / assessment. I thought it was probably osteoarthritis, because I have family history, and also when I googled my symptoms, that's what kept coming up. GP agreed it was likely osteoarthritis . But we still discussed that it could be other things (GP was mainly concerned to rule out rheumatoid arthritis). Turns out I have a torn meniscus. All of those conditions need support. Treatment for each is very different

Autism is not a straightforward diagnostic process, otherwise it wouldn't need a psychiatrist to diagnose. Yet Autism / ADHD is one of the few cases where people stare they are "waiting for my diagnosis" rather than "waiting for an assessment".

It's not ridiculous. It's my lived experience. I have dc with complex additional needs and have been through the hoops of assessment numerous times

One close friend was told she wasn't following an NHS assessment. She refused to accept it and pursued a private diagnosis. She was diagnosed over the phone and they never saw her in person. It would be laughable if it wasn't so tragic.

It’s not something I recognise. Anyone I’ve spoken to ( mainly parents talking about their kids) have always said waiting for assessment.

either way- it’s purely anecdata. And I’d suggest that you are guilty of confirmation bias.

are you saying that you have convos with a wide sample of people with different conditions that need assessment, and all the ND people are saying they are waiting for diagnosis?

but you state it as if it’s scientific fact. Basically it’s your own opinion garnered from a set of preconceptions and assumptions you’ve made which is reinforced by only looking at the examples that fit your opinion

OP I suspect I might be diagnosed with autism. I too have wondered if maybe I masked heavily my whole life, then burnt out.

I don’t know if you’re familiar with that Myers Briggs personality type quiz but I went from being consistently ENFJ (an extrovert type) in my 20s and attending social events multiple times a week and spending multiple days a week joined at the hip to various besties to being INFP now (introverted type) who WFH almost full time and doesn’t see anyone most days.

I rarely leave the house unless I’m travelling for work, attending someone’s birthday (I still make an effort for my friends and their kids events etc) or traveling abroad.

I get all my deliveries online, as I find shopping increasingly stressful and I’m finally learning to drive because I find the crowded and unreliable public transport stressful and get frustrated if I’m late.

Some of it is habits I formed in the pandemic but before lockdown was a thing i had already started doing a lot of this.

That said I have been diagnosed with dyspraxia which shares some of the social communication issues as autism has , so I put it at least partly down to that and don’t see the point of a new diagnosis.

I’m already aware I’m ND and so are my work which enables me to get reasonable adjustments. Austistic, or dyspraxic doesn’t really matter.

In your case you have ADHD so I don’t know if some of the issues you encounter are linked to that?

For your info. Ten years teaching SEN. Another Ten years working in learning disabilities services

So, when you assume I have no relevant understanding or experience, simply because I've asked questions which challenge your own views - you're making a whole lot of assumptions yourself. So stop spouting nonsense.

I think where people get frustrated is when people pathologise completely normal personality traits like social anxiety and introversion. My SIL thinks she has ADHD and will say things like "I find it hard to motivate myself to do things I'm not interested in" and "I have to make lists to remember things". Well...yeah.

Personally I find it difficult when people say things like "maybe I'm just really good at masking and I never realised". Masking is really hard, it's not something you do without noticing. It's also not something you can do perfectly. Only yesterday I was in an important meeting and this guy said "What? Why are you making that face?". And I had no idea what face I was making and had to awkwardly talk my way out of it. As hard as I try this stuff still happens and it's fucking annoying.

I too have wondered if maybe I masked heavily my whole life, then burnt out.

This is incredibly common, especially in high functioning women. Cycles of functioning and then burning out are also incredibly common - mine tend to come every four years or when I have a life changing event or big transition.

Yes this makes sense. I think my transitions could’ve been moving jobs and relocating twice and then later on becoming reasonably well known in my creative career?

I’m not famous, but my work has been featured /spotlighted in national and global publications and if you Google my name a bunch of stuff comes up about my work. It took a while to get used to!

Also it wasn’t until my thirties that it hit me I was doing so many things from a young age to try fit in such as rehearsing conversations, over-thinking past social interactions, deliberately making and timing eye contact during conversations, (after a friend in school pointed out me I never make eye contact) not smiling “too much” when I listen to people as someone once told me I smile “too much” and mimicking other people’s mannerisms.

People from my 20s would’ve known me as a social butterfly who has a wide network of friends and had worked and lived in various cities/countries, but as much as I enjoyed it I think over time it took a lot out of me. I also lived in flatshares during this time and worked in jobs which involved lots of face to face interaction.

I did have one (infuriating and intrusive) flatmate complain I locked myself away in my room. Now I see that was me trying to recharge and avoid total burnout .

You can write some of these things off as Common introvert problems sure, but I think doing it to a certain extent indicates it is more than regular introversion.

I assumed no such thing.

you didn’t ask any questions, you stated that people always talk about getting a diagnosis for Autism, but not an assessment. And that this is something you only see with autism. The inference being that most people who go for assessment want a diagnosis. I think that’s a highly improbable outcome.

i for one ( as stated upthread) had no idea my DD was autistic. I assumed the doctor who referred her had been mistaken. I also referred to her getting an assessment. So there’s a data point that contradicts your theory.

I also think you show a lack of understanding about the motivations of people opting for an assessment. Or of the reality of health/sen provision in this country. Many children who have been diagnosed with autism have only got the help they needed because their parent(s) have fought against Sen professionals who’ve dismissed concerns.

being a senco doesn’t mean you’re able to diagnose autism. My DD’s school’s senco said there was no way she was autistic- got that one wrong…

I am recently diagnosed with autism and you could be describing me in your description of yourself.

Oh for goodness sake. Nust chipping in here to back up the OP that teaching SEN doesn't mean you have complete authority on autism (and actually

a lot of SENCos get it very very wrong). I've taught SEN children for 17 years... again, doesn't mean I know it all. We all have SOME relevant experience and understanding of autism. It's people like you that make it so much harder for people to get their children (and themselves) diagnosed - the 'know it all' attitude. My son's old GP was like that and practically laughed me out of the GP surgery when I suggested he might be autistic. One year later and he has an ASD and ADHD diagnosis... another 6 months later and he has an EHCP and loads of support. Hes doing brilliantly now, no thanks to that stupid cow. Thank goodness I didn't listen to her when she told me I was talking (spouting?) 'nonsense'. She, like you, wouldn't allow HER views to be challenged. For a person in a position of authority like that, that is a massive flaw. OP, I'm with you.

Same here.

I completely understand where you are coming from. It is frustrating when people say they have ADHD because they are a bit organised- or autistic because they like routine. It diminishes the real challenges ND people face.

but I’d question whether someone can’t be aware they are masking. I think many people who are masking do know they are doing it but don’t recognise it as ‘masking’ - it’s just something they’ve always done and assume it’s normal.

Yes, to the last sentence. It was my normal which I presumed everyone else did as I’d never known any different.

I find this thread so fascinating so thank you OP!

I have such mixed emotions about the ND topic. I have an autistic toddler so am quite invested in it. I'm also a social worker in adults so all vulnerabilities (autism, learning difficulties, addictions, mental health) are my bread and butter so to speak.

I really can see both sides!

On one hand I honestly believe life is very hard right now for people in general. We're not living the way humans are suppose to live. Staring at screens most Hours of the day (work, TV, phones). Now working from home so little social interaction for many. Also after the pandemic all normal social events can feel huge to even your most NT person.
Then clothing is made from mostly synthetic/plastic materials due to fast fashion rather than natural so uncomfortable. Most food is now processed so our taste buds have developed to prefer certain foods and textures over natural meals.

Then we have the modern lifestyle which is hell for a lot of people, particularly women. For many they have to work full time, whilst also doing the childcare rush every morning, getting an entire household ready and out the door in order to log in by 8.30. you can feel like you've worked a whole day by 9am! Then the manic pick up rush, after a whole day at work in order to get collect kids from childcare and get home and start your evening job of extracurriculars/hobbies, tea, bath time, bed routine. Then also tidying up the house and getting things ready to repeat the next day. A lot of this burden also falls on women primarily!
Then after not socialising all week whilst also being run ragged the thought of attending a social gathering of any sort at the weekend feels overwhelming. With pictures being taken for social media so having to be aware of what you look like at many social events, the housework you need to catch up on whilst also taking DC to hobbies and doing a good shop or whatever.
It's exhausting and overwhelming just typing it out. It's a week full of stimulation with no relief. Even in the quiet were glued to our phones and bombarded with more stimulation.

I think life now is so overwhelming and stimulating that it can be so easy to look around you and think 'why the fuck can't I cope? Everyone else does!' then you see an advert/tik tok or whatever listing the symptoms of neuro divergence and think BINGO! This must be why! I'm always overstimulated, running late, socially awkward/avoidant, burnt out, behind with everything. It must be this because why the F else am I this way?

Now on the other hand, my little girl is autistic. She's a toddler. She rocks bath and fourth and flaps her arms stimming. She only eats smooth textured food, she screams and headbangs if we enter a shop or somewhere busy. Despite this, she appears to be academically able. She can count, do her alphabet etc. So I'm guessing she may (or may not) in time stop a lot of her outwardly autistic behaviours as she learns to mask and becomes aware of social norms. Maybe she will twiddle her hair constantly or bite her nails instead of rocking/flapping in order to 'mask'.

From my understanding (correct me if I'm wrong?) masking would be, biting nails in public instead of arm flapping. But once at home, full blown stimming that been bottled up all day.
However this is confused with acting a certain way in public that you wouldn't at home which we all do. For example not laughing hysterically and snorting in work but doing so with close family and friends at home.

A girl I went to university with has recently been diagnosed as autistic. Now despite her doing a degree and living in halls, she was clearly ND. She would attend ALL social events/parties and wear whatever costume the theme of the night was. But she would stand by the wall in silence throughout the entire event. If you tried to talk to her and make conversation she would reply one word answers whilst not giving any eye contact. It came across oddly that she would choose to attend everything and go through the effort to buy/make costumes only to turn up and stand in silence staring down at her drink.
Yet she ran a successful blog online. It was fantastic to read and she was clearly an interesting and articulate person, but that didn't translate into real life.
Even at meal times during the day, she would come but not utter a word unless spoken too and would give a one word reply which she looked pained to do.

So I understand how you can be high functioning ASD. I imagine she would be able to find employment (online maybe?) and maybe even meet someone.

But then I do think life is just generally tough and a bit shit right now for a lot of people. Technology has advanced quicker than humans can adapt and life is chaotic whilst simultaneously appearing easier. I can understand why people (particularly women) are looking for answers as to why the fuck they are struggling.