To wonder where introspection ends and autism begins?

[PensivePension]

So, please hear me out before piling on!

I have a DS with autism. I do know a lot about it (well the autistic traits he has). He has good language, some rigid thinking, but can come across as NT to those that aren't looking for it.

But this is thread is about me.

I'm asking because I hear a lot about women (especially) getting diagnoses of autism in their 40s. Now, you have to assume that the difficulties the autism creates weren't so obvious or debilitating as theye people got to their 40s, got jobs, mortgages, had families etc. Not without a lot of masking, and internalised distress I'm sure, but to people looking in, any eccentricities or difficulties were not screamingly obvious.

Which brings it to me. I need more 'down time' than anyone else I know. I can do small talk, enjoy it sometimes, eye contact etc, in limited doses. I hate parties, being around lots of people, attention on me. I find some places way too 'much' though I can cope with them. When I get home after seeing friends, even if it is a low-key evening, I need a good 2 hours to decompress before I can sleep. I am happy spending whole days not talking to anyone. If I see people unexpectedly, even friends, my instinct is to literally hide.

I consider myself to be a friendly introvert, who just needs lots of space. However I am beginning to understand how 'extreme' my introversion is, and the toll on me if I do not get time away from people - including my family.

Where is the line between finding being around other people hard to cope with on a daily basis, and the social interaction aspects of autism?

I have a dx of aspergers, having grown up with massive social communication problems. I basically spent my teens as anorexic based on wanting to control everything around me, would shut myself in the toilets/bathroom for hours at a time, because there was a lock. Today met someone new and have had to manage anxiety all evening, but have self medicated with wine.
I have three children with autism, and no longer, after seeing the dangers of it, want to engage in " masking", although it's a hard habit to break.
I think if it impacts your life in a negative way, and this does require careful consideration because it will be the norm for you, then it's worth knowing just so you can learn to cope and accept yourself, and that it isn't in your control. It's ok to just be autistic.
I'm also constantly shocked by my dd, and just how socially skilled she is compared with me, and she is 8. She gives me social advice

When parents bring children to see us, we often think one or both of the parents are autistic, too.

I would say I have lots of traits but I don’t have the right pattern of impairment. I don’t have any communication issues at all. I have a child with the save profile (sensory stuff, reduced eye contact, tendency to collect and obsesses and to need routine). I’ve observed her for years and I’m confident I wouldn’t diagnose her in clinic because there’s not enough in the ‘communication’ box

That's interesting Meesh77. I am curious to what a professional will think of me. I think the thing I worry about is masking and them missing it... I assume you are used to that?

Yes because there are some things you just can’t mask, even if you think you are doing it - though don’t worry about that because I think only professionals can spot it!

Also, we take a case history, and the beauty of adults is that they can self report a lot of things

Can I ask if it's genetic what the chances are of passing it on to children? I don't really want them to be like me. My husband is outgoing and opposite to me in many ways so hoping if I'm just am extreme introvert and socially awkward and it's nature over nurture that they will escape a lot of the issues I have

How do you go about getting a diagnosis? Starting with a GP? Or is there somewhere you can go privately?

Different in that my DX is ADHD but I'm mid-40s & it would never have occurred to me that I have a neurodiversity.

Someone suggested ASD but I didn't think it was a good fit & so pursued an assessment.

Now that I visit online support groups & know more about things, it's made such a difference. I'm giving myself more time & manage things to suit my needs better. Masking is massively tiring, so I'm experimenting with that too. It's all fascinating.

I must admit I'm in the "gift" camp, due to specific circumstances of my life, particularly finding a DH who understands me well & worked to my strengths, way before DX. This has proved a godsend as ADHD rarely travels alone & co-morbidities are common. I have also got myself a weighted blanket!

So not a label, bloody helpful DX!

I don’t think we really know the answer to that. Anecdotally, I think it’s genetic, but I think (from personal experience) that it’s a lottery.

So I have one child who has inherited my traits as well as some traits from the other side of the family (still not enough for a diagnosis). My other child has sensory seeking behaviours and absolutely nothing else. You simply don’t know how the dice will fall.

I wouldn’t let it put me off having kids, having a parent who can reflect and understand is powerful.

Thank you thats reassuring. I think the biggest positive is my obsessives has led to me fighting to get the right education for the kids tirelessly. Biggest negative is I worry they are autistic because of me

I think I may be autistic, but I'm not sure. I'm waiting for a call back from a psychologist to see her about OCD and possible GAD so I wonder if she brings it up. I feel like I could have written this post. I was just thinking the other night that I dont feel like other people, I just dont fit in. Luckily my DH isnt a super social person haha. I get a bit antsy and very uncomfortable around new people and I hate when people beat around the bush because I just dont pick up what they are trying to say

You can approach your gp and ask what services are commissioned in your area, or you can look privately. If you go private, have a look at NICE guidance and try to find a service that mirrors that

They aren’t autistic because of you, they are just your kids, with perhaps some of your features.

Autistic people often have many strengths, so they probably have your strengths, too. Dogged determination is an excellent strength. I bet you’re a great mum!

Well, zzz, they’d soon spot if that was a recent development when they took a childhood history from you.

I think if you are in your 40s, and especially if you're a woman, you probably wouldn't have been diagnosed with autism unless it was particularly obvious.

Autism is complex and fingerprinted as Meesh77 stated.

My son excels at language and is a pedant but he used to pronounce words wrong because he pronounced the way they 'should' be not the way they are.

He also can act and his pantomime dame is famous at 6th form. Although he cannot speak to a stranger including Drs.

He feels emotions too much and cannot process the overload and gets upset easily. This has had an additional effect on his mental health.

I am looking at PDA for my son, attending seminars etc, as he ticks all the boxes for that on top of his Autism diagnosis.

As an adult he will now ring me from where he lives in an absolute panic because something unexpected has happened - like a meeting for work - and we breathe together on the phone and then talks through the issue and off he goes to do it.

He tends to obsess over certain topics and lives and breathes things.

But that is HIS autism. Everyone's is different with common traits.

I think a lot of people can relate to your post. Myself included. I think you need to look at the triad of impairment and see where that fits. For me, I get overloaded quite easily in busy shops, group settings, noisy traffic, at home if both DC bombard me with conversation etc. But I manage it, it doesn’t affect my ability to run a house, work etc so I don’t see the point in labels.

Exactly right. PDA is very contentious but we diagnose it in clinic and I diagnose it in the nhs, too. It makes perfect sense.

Are you going to the NAS PDA conference?

My DCs have traits, but neither enough for a dx. I work with a variety of autistic kids and it is very obvious they’re autistic if that makes sense.

I know what you mean my family has alot of adhd and in the older generations probably at least one undiagnosed aspie. I know I have certain traits as does my DS but I think we skirt the boundary between normal and aspie.

I’m
A bit like you, at sea.

But for some people, those traits are a bit more unmanageable, in which case a dx can help put things into perspective and make sense

Thanks

One thing I repeat to anyone when we discuss Autism is the age old " if you've met one person with autism.....youve met one person with autism"

My 4 couldn't be more different:

One is academically able, articulate and keen to be sociable. Social skills are lacking however and he has no concept of personal boundaries.

One is very developmentally delayed, limited eye contact, lots of echolalia, hates role play or comments such as " love you baby" (I'm NOT a baby!)

One has a PDA profile and such high anxiety I ache for her very jeckell and Hyde, selective mute and takes on characteristics of children in the unit.

Other is highly anxious and emotional but has a brilliant sense of humour developmentally delayed but bloody adorable

Sorry zzzz, I thought you meant if you went for formal assessment.

If they aren’t assessing you, it doesn’t matter if they think you have traits. It’s just an opinion that’s going nowhere.