Autistic Women?

There's a lot of information and positivity in Ausome Training's Ausome Women series on Youtube.

www.youtube.com/watch

Hello, 

Please excuse my late reply, I have only just signed up to NAS Community. 

I am 29, female and I used to work in the autism sector. I am also autistic myself. Please feel free to message if you ever fancy a chat.

I am relatively newly diagnosed myself. I have been assessed twice 1st time I was misdiagnosed as not autistic due to my high ability to mask. 2nd time I went for a follow up appointment for my ADHD and was offered to be reassessed. It's been an experience for sure but I love being autistic. 

I am also generally very not keen on medication but I have been considering HRT (out of desperation to be honest). 

Kate Kestrel said:

I’ve been tempted to try HRT

Kate Kestrel HRT is one of the best things I've ever done, and I determinedly avoid meds as well

It sounds like good progress to me! I'm glad that you discontinued with that therapist and are now on the lookout for someone who understands autism (or at least is open-minded and willing to learn). I can understand about not trusting therapists and mental health professionals, though I have probably not had as bad an experience as you. I do not have a lot of trust and confidence in mental health professionals as I have often felt misunderstood (and labelled/ put in a box) and I feel let down because noone has been able to help so far.

There must be some professionals out there though that are experienced and can help- it is probably just a matter of finding them and it sounds like you are making good progress there! I hope you find someone suitable soon. 

What might also be helpful is to see if there is any advice service for autistic people in your area? I am currently in a similar situation where I have only recently realised that I am autistic and I am trying to find a therapist and the support I need- I was surprised to find that there is an autism advice service in my area (independent of the clinical setting) and they have even offered me a meeting to help and advice, plus lots of resources. Not sure if anything like that exists in the US ...? 

It's great that your (ex?)partner is being so supportive. 

Like you say, knowing why things are 'hard to navigate' and understanding yourself better, is so helpful. It can be a lot to take in though (at least for me- It is a huge revelation and so much makes sense but it also raises so many questions). 

I hope you find some good support!! 

Wow that’s quite a wait. Glad you’re in the queue at least though. congratulations on that. I’d be curious to hear about your experience with bein assessed in the future when it comes around 

I discontinued treatment with that therapist yesterday. I feel good about it, she understood and told me her door is always open which was nice of her. Really just felt like five steps in the wrong direction working with her though.. spun me out a bit.

there are few things I appreciate more than an end without bitterness though so I’m appreciating that and moving forward. 

there are therapists out there with more experience than her.. some even covered by my insurance that may be more informed about autism or have other autistic patients, at the least. My issue though is my - for lack of a better word - resentment toward the mental health system here in the US. I went through it back in highschool, so 12 years ago now. It was pretty awful and ultimately lead me to explore chemical solutions on my own .. aka addiction. I’m only just coming up on 2 years sober so needless to say I’m *overwhelmed* revisiting the system .. even without the consideration of medication moving forward it just .. the whole thing. Appointments , phone calls, meeting new people.. all of it brings anxiety up for me. 

not totally sure what she is to me today, but my fiancé that I had split up with is actually helping a lot doing all the calling and navigating of my insurance and vetting doctors to see if they help adults or have experience with autism and all that. She whittled it down to a list of numbers to try, and even still it has me feeling like I want to pause pursuit of professional assessment or therapy. I might just need to slow my roll.. let everything sink in. Not to mention the confusion of being in contact with my (ex?) partner at all. It’s all overwhelming and confusing and she’s moving away-Like 12 hours away but she still wants to support me with this? I don’t know. Moments like these I just feel I aughta be where my feet are and self -validate and just slow everything down. 

but hey! At least I know now why things such as these are so hard to navigate. I don’t need to beat myself up about it today. And that’s worth somethin. Progress. 

Thank you glad I’ve found you guys 

Amen to that. 

Hi there T. Welcome you'll find the company here. Had my epiphany at 56. A fair few of us relate to that one :-)

I am so sorry that your therapist is acting in this way- I am starting to realise that some professionals seem quite clueless about how autism can present in women. And many seem to think that being autistic makes no difference to what kind of therapy you are likely to respond to (which from what I can tell so far is not true). Are you still seeing the same therapist? Can you possibly find a therapist that has some experience with autism or at least is more open-minded? (I'm not sure how the system works in the US and if you can pick your own therapist?). 

It feels so good to have some clarity. I hope you can eventually access an assessment to have that external validation. But like you say, you know yourself best. I know what you mean about it just fitting and feeling true. I always doubt and questions things though, including myself so I am hoping to eventually have an official assessment (waiting times here are 12-16 months and I might move again... so it may take a while... I guess with time I will hopefully become more confident in identifying as autistic. Being part of this community is helping for sure as I can relate to so many of the posts).  

Wild ride indeed. 

Hi Ann 

March 7th of this year, so earlier this month my fiancé and I had a fight. At this point in our relationship it wasn’t uncommon for the volume to go up during disagreements. I found myself more and more prone to being frustrated with her less and less tolerant. This particular night I had what I know now is a meltdown. An admittedly complex frustration, left me wailing and hitting my hands and head on the fridge. She grabbed me to stop me and held me on the kitchen floor for quite a while, kicking and hyperventilating. Just sobbing. She left the room in frustration at one point and it escalated things further. I was throwing things. I broke her phone and grabbed my keys to flee and she stopped me. I hurt her arms trying to wrestle my keys away..

She talked me into staying the night and my emotional flooding picked up pretty easily the next morning. She told me I needed to call someone and left for work and that was enough for me to start packing up my things. I moved out that day.

I started therapy to address and unpack some of my “anger problem” because it was unanimous that that behavior was unacceptable. “Physically abusive” kept coming up. That was the new me, as far as I knew. Hopeless of ever being able to forgive myself for hurting the one I love. For being perceived differently than I feel, yet again. Note: this isn’t the first time I’ve acted in such a way. These “episodes” deemed an eventual unavoidable for me in relationships. It’s my pattern. And at this point I was really settling into the thought that I’m unlovable. Or that I shouldn’t try and love. I work a 12 step program and those who helped me through the situation also had to agree, as victims of domestic abuse themselves, that my behavior was simply not acceptable. I’m not a mean person but find myself looking to others to see how I aught to be. Very easily influenced because of consistent doubt in/ consequence of my own authenticity.

Anyway I started therapy and after a session or two took researching my deal upon myself (in my usual style “I can fix it/ figure it out quicker than you”) and I did. Almost immediately I found the link to autism and connected all the dots going way back not just to this recent meltdown but all the way to childhood. Some inquiring with my parents (who seem to be relieved  by the label) confirmed for me that I am indeed autistic. The first time I said that was March 20th. I’d finally found the thing. I solved the mystery that was me. This brought me a lot of peace.

I know it’s another discussion all together, but when I presented my findings to my therapist it was very upsetting. I fielded some questions about stereotypical tells of (male) autism and she decided quickly I wasn’t and discouraged labeling. She said it would surely keep me from doing the work. Between my perception of myself being a perception of my masking and the disregard for range of the spectrum and how it can present in women, I got lost briefly in what she said. Very upsetting. To the level of suicidal ideation (once again) and thoughts of relapse. Note: my therapist is a student and our sessions are part of her schooling. I’ve decided to move past her opinion and continue my research and stick to my self diagnosis. I feel it in my gut. I know it to be true.

I don’t know if a professional assessment is something I’m going to have access to anytime soon. Not without help anyway. Here in the US I understand adult assessments can cost beyond $2k. Aside from the cost I’m worried about, as you said, not being validating in the first thing in a long time that has resonated with me. As my therapist did. I’m scared of anyone taking that clarity away from me.

Yes. It’s good to hear about things getting better ‘on the other side’. I’ve been tempted to try HRT - which is odd for me as in general I determinedly avoid medication if I can. Shows how desperate I am that I’m tempted to try HRT to be honest. I don’t think I will though. 
It may my illness last year that made me more worried about our isolation - it made me view me and my whole family as more vulnerable. The three of us (me, my husband and my youngest) depend on each other entirely for friendship and basically everything. We get on so well but we’re all autistic and we find lots of aspects of life so difficult and we have no outside support at all. It’s a worry. 

Interesting about menopause. I have now gone through that although still occasional flushes. I noticed as I went into menopause I missed the times when hormones helped with some positivity. On a positive note things do improve although a bit different on the other side.

I am also with you feeling like a family island. I too have a supportive husband. As my son has got older contact with other families has gone. Friends and aquaintances with neurotypical children don't get our lives.

Hi,

I'm 25 and I also suspect that I am autistic. It was recently suggested that I could be autistic and when I started reading up about it, it really resonated with me and so much made sense. I have felt like "an alien" all my life, have special interests which I pursue to exclusion of all else, love routine etc.. I am waiting to be assessed and I still have moments where I am worried I may just be label seeking (which would be scary and sad as it fits and as I really want to belong). Realising that I am probably autistic has been a huge comfort for me- I felt less alone in the world and I feel like I finally belong somewhere. It would also explain a lot of the struggles I have been and am facing and it helps reduce some of the self-blaming, as I now understand that it wasn't simply me "not trying hard enough". I am hoping that I will become more accepting of myself and I am determined to be more myself- the masking (which I remember being a more conscious effort in the past), has become very engrained so that I sometimes struggle to know who the 'real me' is.

What is interesting is that I have now realised that my handful of friends are almost all also neurodivergent - I guess it makes sense. 

I am glad that I have realised that I am probably autistic- unfortunately it took yet another severe deterioration of my physical and mental health (complete burnout) for it to be picked up - It was actually my dietitian (who has some other autistic clients) who picked up on the signs- my new mental health team agrees there is a strong possibility, but none of the previous professionals thought of it... and even now I am still facing some issues with some professionals being unaware of the female phenotype... How did you figure out that you are autistic? 

Reading about autism and other people's experiences I has also really helped me recognise some of my patterns and issues. 

I am so glad that I found this community.

I would love to hear more about your epiphany! Has it helped you realising that you are autistic? Are you planning to get an assessment? 

Ann 

That warms my heart.  This feels like the only place online or in person where I walk away not having to process what was said. It just makes more sense here. 

Nice to meet you Kate!  

Yes. I’m not doing well at all at the moment. I have PTSD after a (physical) illness last year and that has made things much worse for me too. I’m shattered to be honest. I’ve been getting panic attacks and I get a rush of heat during these - and it suddenly struck me that these might be menopause related. I’m just so tired. I have a wonderful husband and children but apart from that we are fairly isolated. I’ve struggled with friendships and to be honest didn’t really want them most of the time. However recently I’ve felt the need to connect with other autistic people - which is why I came on here. I’m so glad I did because it’s so nice to see how much I relate to what people write on here - it all makes so much sense to me. It’s a relief to be honest. Sometimes I feel like me and my family have been on an island for years - not really connecting with the outside world in many ways.

Bingo!  I wonder that too. 5 years ago it became so hard maintaining everything, and bit by bit I start to stop.  I came isolated myself as maintaining friendships got too hard, my gym bunny persona died as I couldn't handle all the people and small talk in gyms etc.  Everything just stopped for me.  It still has.  It's a complete fluke that led me here. I is still a wild ride, but it it's a bit clearly now as I recognise the route a bit. Not sure what do do with all the information yet though.

Wild yes. I’m actually finding things harder now than ever. I sometimes wonder if autistic women hit a bit of a wall when they reach menopause. We’ve been just about managing to cope and then the menopause just adds more anxiety etc and then we can be pushed into crisis. 

I'm newly self diagnosed too. 51.  What a wild ride to this point i's all been, eh?