Autism: Our Story So Far

autism story 1

The main reason I started this blog was as a place to talk about autism and somewhere to vent when I’d had a bad day. But so far I haven’t spoken about it at all, I suppose I wanted to make sure I had the time to sit down and write about it properly. So here we go…

Since Max was around 18 months/2 years old I started to notice differences between him and other toddlers. It was just little things like his clumsiness, his endless amounts of energy and his obsessive behaviour with things like plug sockets, washing machines and hoovers.

By the time he reached 3 I was convinced he had an Austism Spectrum Disorder (ASD), but it wasn’t until about a year ago that people finally started to listen to me. I had previously taken him to see doctors, health visitors and had spoken to nursery staff. All I even got was “he’s just a typical little boy” or “it’s normal toddler behaviour”. A health visitor actuallyย once told me that he couldn’t be autistic because he was making eye contact and hadn’t rushed straight over to play with the plug sockets and wires!

His quirks seemed even more obvious as Evie started to get older, she is so different to him. Don’t get me wrong, she can be hard work at times but it isn’t a patch on how Max was and still is.

When he started preschool they slowly started to pick up on his problems and eventually they got somebody in to observe him. He was observed a few times at preschool and then at home before we were told that they had seen enough to refer him for an assessment for autism. ย Finally someone believed me! I wasn’t going mad. It wasn’t just that I couldn’t cope with him. I felt relieved mostly, but also sad that it probably wasn’t something he was going to just grow out of.

autism story

The referral was done in July last year and we’ve only just this week had a letter through with a date for his assessment. It’s on the 15th of February and I actually cannot wait to get it over and done with, this has been hanging over us for such a long time now.

We’ve been told to expect the assessment to last 1.5 to 2 hours and Max will be seen by a range of people including a speech and language therapist, a psychologist and a paediatrician. We will also be interviewed about his early developmental history and our current concerns.

I have been asked by a couple of people why we want a diagnosis but it seems like a silly question to me. If it means he gets the help he needs and we get advice on how to deal with him, why on earth wouldn’t we want a diagnosis? This isn’t about labelling him.

We have never mentioned the word autism to Max and I’m not sure when or if we ever will. I certainly don’t want him to think he’s different to other children. So I’m not sure how I’ll explain the appointment to him, maybe I’ll just say that the doctors are just checking to see how clever he is?

I don’t know for certain if we’ll come out of this appointment with a proper diagnosis, he may need to go back for further testing. But either way, there is no doubt in our minds that he has ASD.

Some days I absolutely hate autism. But on those bad days I have to try and remember that he is exactly how he’s supposed to be and without autism he simply wouldn’t be Max, his quirks make him who he is.

“Autism is part of who I am” Temple Grandin.

If you have any experience of autism and the assessment process then please let me know. Any advice would be greatly appreciated.

Thanks for reading.


 

29 Comments

  1. January 31, 2016 / 12:09 pm

    I have worked with autistic children during my entire working life (11 years). If you ever want to talk feel free to email me losttothedark@hotmail.com. You’re son

  2. eatcleanmichelle
    January 31, 2016 / 12:09 pm

    What a great and heartfelt post. My heat third out to you. My son is also autistic and like you it took so long for his diagnosis. We have always known that he was autistic but teachers assured us there was no issues. When he was finally reviewed my paediatrics they confirmed what we always had known. He was finally diagnosed with ASD at 9 years old. Never doubt yourself a mother knows her child better than anyone. Sends you love and lots if encouragement from one autism mamma to another ๐Ÿ’™๐Ÿ’™

    • January 31, 2016 / 2:14 pm

      Thanks so much for your comment. It’s comforting to know that others have been through similar xx

  3. January 31, 2016 / 12:09 pm

    *your son is lucky to have you fighting his corner to get him diagnosed x

      • January 31, 2016 / 2:23 pm

        You’re very welcome x

  4. eatcleanmichelle
    January 31, 2016 / 12:17 pm

    What a great and heartfelt post. My heart goes out to you. My son is also autistic. And like you it was a fight to get the ball rolling for diagnosis. We have always known from the age of 2 that he may have autism. But the Gp and the school teachers assured us there were no concerns. When he was finally reviewed by paediatrics, they confirmed what we had always known. He was finally diagnosed with ASD at 9 years old. Never doubt yourself a mother knows her child better than anyone. There have been so many tears and frustrations and still are, but he is your baby and he is created that way… Autism is part of him and always will be, but it doesn’t and never will, define him. Stay strong… Sending you love and encouragement from one autism mamma to another. ๐Ÿ’™๐Ÿ’™
    Michelle xo

  5. January 31, 2016 / 12:21 pm

    All I know, from teaching, is that it can be a slow process. If you get a diagnosis of ASD, then that affects the level of support within mainstream school (in a financial sense, i.e whether they appoint a 1-2-1 assistant).
    However, if you have the support of nurseries and schools, then assistance can be put in place, even without an actual diagnosis.
    One child I taught didn’t get a final diagnosis for a while after initial tests but we all recognised that he had autistic tendencies and made adjustments accordingly (visual timetables, giving more warning of changes in routine etc). He flourished in school and the other children didn’t talk about autism but ‘Benisms’ – they loved the things that made him unique.
    So, even if red tape gets in the way, if people can learn to work with his quirks, he’ll be fine. Best of luck for the assessment ๐Ÿ™‚

    • lenandlar
      January 31, 2016 / 1:59 pm

      Thanks for sharing. These kids need caring understanding teachers like no other. Keep up your good work.

      • January 31, 2016 / 5:23 pm

        You’re welcome and thanks ๐Ÿ™‚

    • January 31, 2016 / 2:17 pm

      Thanks so much for your comment. We are lucky that his teacher and teaching assistants know his quirks and support him very well. I’m not sure how much will change at school when he gets his diagnosis but hopefully as and when he needs the support its there for him xx

  6. lenandlar
    January 31, 2016 / 1:58 pm

    Thanks for sharing your story. We’re in need of such an evaluation but where we live it’s almost impossible to find good help. We share many of your experiences. My little boy would not be who he is if he’s someone else.

    • January 31, 2016 / 2:19 pm

      Thanks for your comment. I hope you get the support you need for you and your son xx

  7. January 31, 2016 / 4:06 pm

    When it comes to the assessment, you will find it difficult and depressing. So much talking about the things he can’t do. So I would advise that you make sure you have some comfort things in the house for when you get back. Also, take some time now to think of all that is beautiful about him, all the challenges he has overcome. write all the good things about being his parent down and then read them when you come out the assessment.
    It can be a positive experience getting the diagnosis because it helps you to know where to look for your parenting support (normal parenting techniques just don’t work), but even when you expect the diagnosis it still hits like a punch in the stomach. It still feels like you will never breathe again.
    But then, you nod, and tighten your metaphorical belt and get on with it.

    • January 31, 2016 / 4:24 pm

      Thanks for your comment. I am fully expecting it to be a pretty horrible experience but I guess you can never really prepare yourself for something like this x x

  8. January 31, 2016 / 11:00 pm

    This was so helpful. One of my good friends has autism and now I know what it’s like for him. Thanks for sharing xxx

  9. January 31, 2016 / 11:04 pm

    This is such a moving post. I’m a speech and language pathologist and have worked with children who have ASD for nearly 20 years. If there are any questions I can answer please let me know–trhengerer@msn.com
    Take care!

  10. February 1, 2016 / 2:13 pm

    I can’t explain why but I’ve always been so drawn to reading people’s stories concerning autism, even though I have no close experience with it. But I’m starting to notice something going on that’s not quite right with a friend of mine’s son. He’s very behind developmentally and no one wants to listen to my friend’s concern for him. I think I embraced autism before I needed to know it because God knew it would tumble into my life this year. It’s definitely a journey that requires community to survive with any sanity.

  11. February 3, 2016 / 7:38 pm

    I have 3 children on the spectrum and the diagnosis was always so long and drawn out, I still don’t understand why they just cant skip to the ADOS test and get it over with. The thing I find frustrating about where I live is post diagnosis there is nothing (still isn’t 9 years later) We simply got sent home with a ‘Your Child Is Autistic’ information pack and sent on a post diagnosis course. We found our greatest support was the childrens school, a good school is a real blessing

    • February 3, 2016 / 7:42 pm

      Thanks for commenting Mandy. My biggest worry is that once we have the diagnosis we will just be sent on our way with no help. He does ok at school and I think they work well with him. But it’s different at home, some days are just awful and we need some help with his behaviour x

  12. Clare Seaton
    February 6, 2016 / 9:20 pm

    I am going through this process with my son Jayden he’s almost three and I started noticing certain behaviours when he started preschool in April 2015 he didn’t want to play with the other kids and didn’t really want anyone near him he gets upset by certain noises to many people and textures of food and only drinks milk. Also about four months ago he became obsessed with numbers repeating them over and over again the doctors said he should have an autism assessment but don’t know how long it will take thanks for writing this blog it’s good to know I am not the only one struggling with this problem

    • February 6, 2016 / 9:23 pm

      Sorry you’re going through this too. His assessment is on the 15th so I’ll update my blog after that x x

  13. February 11, 2016 / 8:15 pm

    No experiences of autism myself but want to wish you all the best for the 15th. I have had health visitors dismiss my concerns over and over again and it’s so disheartening to see that you have received the same sort of responses.

  14. February 19, 2016 / 7:54 pm

    What a lucky little boy.. He is in great hands – and sounds like he is covered in love.. My friends with children like your max have wonderful lives with difficult moments.. But don’t we all?..
    It is one moment at a time.. Hang in thereโค๏ธ

  15. Catie: An imperfect mum
    March 16, 2016 / 4:15 pm

    So much of this post reminds me of our experience with autism. My son was diagnosed at 5 and is bowl most 10 and I also blog. You are very welcome to DM me and to take a look at my blog. I have a post about diagnosis if you are interested. http://diaryofanimperfectmum.com

    • March 16, 2016 / 4:18 pm

      Thank you ๐Ÿ™‚ Max was diagnosed last month but nothing has change since then yet. He’s been getting on well at school but has been in trouble today for touching people (he seems to not understand personal space), I really hope this isn’t the start of many problems at school ๐Ÿ™ x

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