Coming To Terms With Possible Autism Spectrum Disorder

A couple of weeks ago I took my A4 sheet of paper full of the concerns I have for P1, along with P1 and Hubby to a paediatric appointment. This was our referral appointment following the visit to the GP and it happened much sooner than we expected. It was such an important appointment and I felt so sick with nerves. I needed to get it right, I needed to remember absolutely everything because I needed to be listened to, finally.

Thankfully I was and the paediatrician agreed that it sounded very much like my daughter has ASD (autism spectrum disorder). At that specific moment I felt a sigh of relief, like the huge bag of rocks I’d been carrying on my back for 7 years had been instantly lifted. We were handed a thick wad of forms for fill out and send back. I felt happy with the appointment and it was that step in the right direction that I’ve wanted for a long time.

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Sitting down to fill in the forms was when everything sort of hit me and I’ve felt really heavy hearted since. Every time I look at my beautiful girl I feel sad. I didn’t expect my own parenting journey to be this way and all I have ever wanted for all my girls is to be happy. I honestly don’t feel like P1 is most days and that’s upsetting. I blamed myself because of the way we react to her each and every day.

Being seven years old, we expected her to be a certain way, to behave a certain way and to think a certain way. She’s our eldest and with that comes responsibilities. Naturally she’s the role model for her younger sisters so when she’s misbehaving, being rude, lashing out and getting angry, it upsets me and angers me. I have expectations of her that she cannot fulfill. Not because she’s a naughty girl but because she’s mentally can’t understand things like “normal” children.

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Despite really pushing for extra help and a diagnosis for P1, autism is actually so alien to me. I didn’t know anything about it except that it sort of meant she was different and there was a reason for her lack of understanding. It’s not because she hates us and her life. I hope anyway. Since filling in those forms I have spent many hours researching ASD trying to understand just what my baby is going through in her brain.

She’s special and for the first time ever I think I can finally see that. That doesn’t make things easier, in fact I’m struggling even more than ever as I adjust the way I discipline and the way we talk to her. All I want is for her to have the best childhood and life that she can. I am the only one who can give that to her and I need to step up and be the person she will always rely on.

We have a very long journey ahead of us and I will of course be updating my blog as and when. I would really appreciate hearing from anyone with experience of a child with ASD and of course words of encouragement.

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18 comments

  1. I have a son & dh on the autistic spectrum – the diagnosis didn’t change them at all but definitely changed my understanding and expectations of both. I have the same gorgeous, quirky, thoughtful and humorous child as before, it’s just that I understand him better. It takes a while to get your head around it, the sooner you get the diagnosis the better as you need some time to adjust – it’s normal to ‘grieve’ a bit, but then you move on, you learn so much, you meet many more wonderful people and families who you wouldn’t have otherwise met – there honestly are so many positives. Definitely avoid comparison with other children of the same age, as children with autism develop uniquely; meeting other similar families really helps with this. It’s great to find a supportive environment, but even when they seem really miserable (I think it’s impossible to get it 100% right!), they still look back with happy memories of those times, phew! Hope all goes really well xxx

    • Thank you. Thank you so much for this comment. It really means a lot and has helped me to understand a bit better. I have joined a support group for parents/carers of children with ASD. I’m hoping that’ll help me a little. I have so much to learn.

  2. Hi lovely.
    I don’t have any experience with this but all I can say is that you’re doing so well by recognising that there’s something more that needs investigating, your instincts as parents are clearly working well and hopefully you and P1 will get all of the help and support that you need.
    It’s brill that you’re doing so much research, knowledge is power as they say, and I hope things get easier and happier for you all.
    You sound like an amazing mummy and P1 is such a beautiful little girl
    X X

  3. Oh, what an emotional time for you all. I’m glad to hear the doctor was taking your concerns seriously. Really hope you all get the support you need. x

  4. I’ve no personal experience but I’m glad to hear you got a diagnosis. There are so many resources available and support for the whole family nowadats which is a super positive. I wish you guys all the best and will be back looking for an update after her referral. She’s a little beauty xx

  5. Have you read Mummy Tries? Her eldest daughter has recently been diagnosed with ASD and her blog is a wonderfully honest account of their journey so far. Sending hugs x

  6. It’s good that you got her checked so now you can get the support that she needs! 🙂
    http://lilinhaangel.com/

  7. It’s a long, long journey (still on it myself with our ds) but I am a firm believer that diagnosis is the way forward xxx Good luck and if you ever need anything just shout x

  8. Like Rebecca, I don’t have much experience with autism at all. My knowledge comes from some great tv documentaries that really brought it to light for me in recent years (including Louis Thereoux). I hope you get all the support you need x

  9. I hope you manage to find the right help and support to accompany you on this journey. Read some of the ASD blogs out there too, it might help to connect with other parents who have felt the same things as you. Good luck lovely xx x

  10. I don’t have any experience of this but it must be nice to be able to understand your daughter now if that makes sense. There are so many resources online that will help. Good luck with the journey, she is still your daughter all the same x

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