Stuck aboard the Runaway Autism Train!

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
  • Hello Kitsune, 

    You may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .

    You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/services/helplines/parent-to-parent/enquiry.aspx 

    Hope it helps!

  • Thank you! That might prove useful! I have been to a couple of support groups for parents of Autistic children but I always end up being the 'token Autistic Adult', trying to put across the Autistic perspective. Although I may find some parts of having an Autistic child less daunting, it can still be a worry sometimes. I have a couple of friends who might find this service useful too!

Reply
  • Thank you! That might prove useful! I have been to a couple of support groups for parents of Autistic children but I always end up being the 'token Autistic Adult', trying to put across the Autistic perspective. Although I may find some parts of having an Autistic child less daunting, it can still be a worry sometimes. I have a couple of friends who might find this service useful too!

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