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Stuck aboard the Runaway Autism Train!

Kitsune

So, it's nearly a year since my diagnosis (12th December) and I have had a crazy few days which has left me needing to vent. After I was diagnosed I absolutely threw myself into 'being Autistic'. I made Autistic friends both on here and through groups on facebook and I started my own group for Autistic women in my local area which continues to grow. I also have friends from before diagnosis who have since either self diagnosed or have actually been diagnosed. My youngest daughter who's 2 nearly 3 was also diagnosed as Autistic in August so I'm also getting a lot of Autism related input on her behalf, attending groups for parents of Autistic children; attending SEN and Autism tots groups; making friends with other parents of Autistic children. For the most part it's all good, I finally found my place in the world, my niche, my tribe and I feel liberated from a lifetime of trying to be 'normal' and wondering what the **** was 'wrong' with me. 

But, sometimes it is overwhelming! I've gone from no Autism to being an Autistic girl living in an Autistic world! Sometimes, it's like being stuck on a runaway Autism train, one that having got on it, I can never get off it again! Take the last few days for example. Thursday, I called by to drop something off to a woman who has an Autistic son, she unexpectedly invited me in for coffee and it became apparent that she wanted to talk about and ask advice about her son, so I listened and gave what advice that I could. Then I went to meet a friend of mine who is recently diagnosed, weirdly I only did the AQ50 back in 2015 to see what it was like as he was doing it, yet I got diagnosed first! Anyway, we went out to Asda as I needed to get a couple of bits there and he chatted about various Autism related stuff. Friday, I had a friend coming around at 10am, I met her through the SEN and Autism tots group as her son is Autistic, due to an unexpected health emergency in her family, I ended up having her son for her for the day so that she could go up to the hospital to visit her relative. So I had to get her somewhat thrown son on the level as well as look after my own still pre-verbal daughter, it went ok in the end though. Today, I looked after my friend's son again while she was visiting the hospital and tomorrow I have another Autistic friend of mine coming around for coffee and a catch up. Most of the time, this is good, but it's a change from how things used to be and sometimes I feel overwhelmed by Autism, Autism and more Autism. Then I come on an Autistic forum to vent about it!

To top things off, my husband is absolutely terrible at managing my daughter's meltdowns (and mine too but that's another story!). Litlun has started having meltdowns lately (I differentiate between a 'normal' toddler temper tantrum which she also sometimes has and an actual Autistic meltdown which is what I am talking about here). She has had two meltdowns today, the one that she had this morning was at the top of the stairs (but safe as I closed the stairgate) and I know that what works if the deep pressure hug fails, is to put on the same lullaby music that I've played to her since she was a newborn and just sit quietly near her and let her get it out of her system. However, my husband kept coming back up the stairs, with my friend's boy in tow, waving various toys in her face etc, which just made her worse. I had to explain to him: "she's having a meltdown, when an Autistic person is having a meltdown, it's because they are overwhelmed/overstimulated, the way to get her to calm down is to remove as much stimulation as possible and let her be", he did eventually get the message and let me manage her and she did calm down once left in peace. This evening she had another one and my husband again started shoving toys in her face, then started carrying her around from room to room, then started trying to 'set boundaries'. I mean seriously! Can any of you imagine, you are mid meltdown and someone starts shoving toys in your face and then picks you up and carries you around and then starts setting boundaries?!!! How would you react? Luckily he eventually left her to me to manage and she did calm down and is now fast asleep!

I'm just having a day of feeling exhausted and exasperated! Rant over! Thanks for reading this far :-)

Parents

  • I read your rant, and hope my reading somehow magically helped :-).

    I can relate to a feeling of being steeped in autism - I'm in a similar place, starting from the end of 2017 when I realised I'm autistic and continuing through to today. I don't have so many connections, apart from using this forum as my only "social media - like" interface. 

    I've noticed this pattern (see below), and only literally just now wondered if there is an established model that recognises it? It's a bit like the stages of leaning - Unconscious Incompetence, Conscious Incompetence, Conscious Competence, Unconscious Competence - but perhaps slightly different? Anyway - here's an example of the stages that I mean. There might be corresponding stages in "The nine Stages of Autism" - I'd need to re-read to check.

    I remember learning to drive. Before I knew about driving or was bothered about it, it never featured in my life. It was always there, but I wasn't aware of it (stage 1). Then I became aware of it as a thing and that I needed to pass a test. I was busy preparing, learning, and it was on my mind most of the time (stage 2). Then I passed my test, and was thrilled. This went on for maybe a couple of years - I was enjoying the benefits of my new situation, and constantly mindful of the benefits (stage 3). Then I started to forget that I now had something that I hadn't had forever. The first inklings of this were sudden out-of-the-blue realisations that I had a driving license, which told me that I was now thinking about driving where in the seconds beforehand I had not been, and it was the fact that periods of time existed in which I was not thinking about driving or my owning a driving license, that told me that I was starting to normalise it (beginning of stage 4).

    My point is, I relate to being in stage 3 in the above example, but also slipping into stage 4 (which is good, because it means the kerfuffle of diagnosis is done with, but also leads me sometimes to question my diagnosis because stage 4 is very much like stage 1 in a lot of ways......).

    I don't have much experience with meltdowns, but I can relate to being the one trying to help and getting it totally wrong :-).

    By the way in case anyone wonders, the analogy relates to the self-knowledge of autism (which doesn't exist, and then does) not autism itself (which exists in an autistic person at all times).

  • in reply to I'm done with Christmas Cards

    Thanks! It helps to know that someone else kind of 'gets' it! 

    I like the link in your analogy between 'conscious incompetence' and learning to drive :-) I know that wasn't the point of the analogy but it made me smile. I think in terms of my own self-knowledge of Autism and specifically how my Autism affects me, I'm probably hovering between stages 2 and 3 at the moment. Aware that I have it but not all together familiar with it yet, still learning the ropes and trying to figure it all out. A bit like having a new, different map for the same city. Essentially everything is still the same but I'm looking at it in a different way. I don't even know if that makes any sense but I know what I mean!

    I don't tend to have very frequent meltdowns myself. I used to have them a lot a few years ago but I learned to manage my responses and to take myself out of certain situations a lot more effectively. However, little lady has started up with meltdowns, usually in high stress situations and I can usually understand what has set them off. I'm also very mentally synced with my youngest so I know how to manage her and calm her, which is why it is so frustrating when someone else starts interfering and doing exactly the wrong thing!

Reply
  • in reply to I'm done with Christmas Cards

    Thanks! It helps to know that someone else kind of 'gets' it! 

    I like the link in your analogy between 'conscious incompetence' and learning to drive :-) I know that wasn't the point of the analogy but it made me smile. I think in terms of my own self-knowledge of Autism and specifically how my Autism affects me, I'm probably hovering between stages 2 and 3 at the moment. Aware that I have it but not all together familiar with it yet, still learning the ropes and trying to figure it all out. A bit like having a new, different map for the same city. Essentially everything is still the same but I'm looking at it in a different way. I don't even know if that makes any sense but I know what I mean!

    I don't tend to have very frequent meltdowns myself. I used to have them a lot a few years ago but I learned to manage my responses and to take myself out of certain situations a lot more effectively. However, little lady has started up with meltdowns, usually in high stress situations and I can usually understand what has set them off. I'm also very mentally synced with my youngest so I know how to manage her and calm her, which is why it is so frustrating when someone else starts interfering and doing exactly the wrong thing!

Children
  • in reply to I'm done with Christmas Cards

    Just imagine trying to figure out the London tube map if it were in satellite view instead of the nice neat format that it is currently in! How confusing! I guess though that switching from road map view to satellite view is a good analogy of suddenly seeing the world from the autistic perspective and suddenly becoming aware of many details that you weren't previously aware of!

  • in reply to Kitsune

    Different map to the same city - indeed! Even something so simple as switching between "roadmap" view and "satellite view" on Google Maps illustrates how the same place can look different - or you could imagine the London Tube Map replaced with a geographically accurate version showing all of the wiggles and turns in the lines!

    It's also a map that gets revealed one section at a time, and some bits fade from view as others are revealed........