Thick with the ‘tism – ASD Social Space

[tyme]

Hi @femmeb0t ,

I can't relate to a ASD diagnosis, but I can relate to having another diagnosis, and let's just say that hearing the diagnosis was a relief in a way. It was an 'aha!' moment because all my life, I thought something was wrong with me. 

Having a diagnosis meant I could tell myself in the head that "Oh, it's just part of my condition" rather "There's something seriously wrong with me".

A diagnosis also helped me get the targeted support I needed.

At the same time, it's not always about the diagnosis. There are times when I don't share my diagnosis because I don't think it's necessary.

So all in all, having a label CAN be helpful, you it doesn't mean you HAVE to have one.

[Jynx]

@femmeb0t hey, and welcome to the space! Glad to have you on board 😉

Me, I'm not formally diagnosed with ASD, but have a whole bunch of traits and symptoms. I do have an official ADHD diagnosis though, so I am more than happy to share some of my experiences around that in the hopes that it is still relevant.

I think diagnosis has overall been immensely helpful for me in terms of being able to better understand myself, and in giving me alternative ways of conceptualising my own behaviours. For example, how easy it is for me to cry!! I used to see that as a fundamental flaw, an indicator of my deficits and weaknesses. Now I know that it is simply part of being neurodiverse, and I have been able to let go of a whole lotta shame.

That being said, I think it's normal for diagnosis to be a mixture, to be bittersweet. Because on the one hand, we can make sense of things and start making adjustments to our daily lives to accommodate our differing needs. On the other, we must come to terms with the fact that this is a lifelong condition that is still steeped in stigma and misunderstanding. It's okay if this takes some time for us to process!

I think in terms of symptoms like meltdowns, again the main benefit I've found is in having better language to help describe and understand my experiences. Being able to see them as meltdowns and not tantrums for instance - goes a long way to reducing that sense of shame! It also means that when I look for coping tools and strategies to manage, I go specifically for those geared towards neurodiverse people, since they're often quite different to neurotypical ones.

So yeah! That's some of my thoughts, and I am always more than happy to ramble about my experiences so pls feel free to pepper me with questions!! 😁

[femmeb0t]

Thank you so much @Jynx @tyme for sharing with me, it means a lot. I definitely think it would help a lot to get an assessment but since I’m not in the financial position to be able to afford that, I’m just going to have to try my best to manage without for a little while! Which is fine! It’s just tricky working out the best strategies for me managing my well-being currently without knowing what’s really going to help, especially in the midst of a meltdown.

I’d love to hear a little more about your initial diagnosis @Jynx (and @tyme if you’d like to share). Prior to this, did you ever find you were using techniques to manage your symptoms that just weren’t working, because they were geared towards neurotypical people? 

[Jynx]

Hmm @femmeb0t I'm not sure about actual techniques per se, but like I was always holding myself to a standard that just didn't apply. Or like, yeah I guess with stuff like 'relaxation techniques', it's always like 'sit still and be quiet' and neither of those things relax me - in fact I've found the opposite is true and I am more relaxed going for a walk or having a dance than I am tryna sit still. I'm like a shark! 🦈😋

Initial diagnosis was a bit funny actually, it happened when a uni teacher got up me for using one of my (unbeknownst to me) coping tools in class. See, if I want to properly listen to and take in information from an auditory source, I need something to fidget with - in this case it was playing games on my phone. Teacher thought this meant I wasn't paying attention and made me put it away. My classmate (who I already knew had ADHD) leaned over quietly and handed me her flippy sequin pencil case to fidget with. After class, I asked her how she knew what I needed, she said w her ADHD she needs to fidget too; I asked if I should get it looked at, she did not even hesitate when she said "Yes" 🤣

After that was about 8 months while waiting for my psych appt, spent a lot of it researching symptoms, analysing all my behaviours, and of course torturing myself with anxiety about how I must have just been faking it all for attention, special treatment, and stimulant drugs. The imposter syndrome is REAL, and I think it's soooooooo common. Legit, so many of my friends have now gone and gotten diagnosed with ADHD/ASD and every. single. one of em... all had imposter syndrome, all got diagnosed, and are coping way better now.

So yeah, totally does make it hard when you're facing those barriers to get the 'official' stamp of ND Approval, but I guess my encouragement for that would be: regardless of any official diagnosis, if it walks, talks, and quacks like a duck.... i.e. if you find ASD coping tools helpful, and if conceptualising yourself as having ASD helps you to navigate your life, then to my mind it doesn't matter whether you got the official label or not, you're one of us 😉

Found some coping tools here you can check out!!

[Andarna]

@Jynx  and Anyone with advice

I need help with NDIS. I'm just having shutdowns after meltdowns on repeat while in burnout. I'm scared of messing it up with not seeing the right goals and I'm think statements or support needed to achieve them? 

I have level 2 ASD (LVL 2), ADHD (inattentive type), cAPD (central Auditory Processing Disorder), and complex Post Traumatic Stress Disorder (cPTSD) as my main 4.

I'm so stuck and overwhelmed with resources but also lack of them that I just go NOPE and shutdown or cry.

I'm scared don't trust the system, I feel like a simple mistake in wording or misinterpretation will mess everything up like a technicality in the fine print.

I don't know anyone else in my area that has done it or done NDIS for ASD +/- MH. So it's hard to find advice from trusted people I already know. 

[tyme]

Hi @Andarna , Do you mean help with applying for the NDIS, or using the services through NDIS?

Hope you are okay. It sounds so tough.

[Shaz51]

hello @Toast89 

come and meet some members @Apricot , @femmeb0t , @Andarna , @Jynx 

[Toast89]

Afternoon!

[Shaz51]

Hello @Toast89 , @Jynx , @tyme , @Adge 😊

[Jynx]

Mighty fine Thursday to you lovelies @Shaz51 and @Toast89 😁

Much on today?