5 yrs, 4 mths ago

Autism spectrum disorder

Hi beauties! I decided to start this forum topic after some discussion on another thread. I have an eight year old son with ASD and thought it would be a good idea to have a place where we can talk and share our experiences parenting children with ASD.

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Replies

  • 5 yrs, 4 mths ago

    I found it! The video I mentioned earlier that was shown at a workshop I did to show people what it can be like to have sensory overload with autism

    Please watch it even if autism isn’t part of your daily life as it can help us all to understand the world from another person’s perspective

  • 5 yrs, 4 mths ago

    I finally got some time to sit down and give my back story. My son Tom is 8 years old and I started noticing signs that something was not quite right from the time that he was about 2 years old. He wasn’t talking or walking, which I thought was unusual but my mum told me not to worry about.

    The child health nurse referred us to a speech pathologist who gave me some basic games to play with him to encourage his speech. This helped a little bit but he didn’t end up talking until he was 3 years old and started walking just before then.

    He’s an only child and it wasn’t until he started day care that it became very apparent that he wasn’t developing in the same way that other children of his age were. When he was around 3 and a half the daycare raised concerns with me that he might possibly be on the autism spectrum but I brushed it aside because it wasn’t something that I was ready to deal with. I’ve been single since the start of my pregnancy so I’m overly protective of him and I felt like I had done something wrong or they were questioning my parenting.

    When he started kindy his teacher came to me with concerns about his development which is when we went back to a speech pathologist and also had his hearing checked. His hearing was absolutely fine and his speech was developing although it was much easier for me to understand him than anyone else and he also has quite a prominent lisp. His teacher also wanted him to see a child psychologist because she was concerned he was autistic but due to family pressure I decided not to follow through with this. He seemed happy and he was learning although he struggled socially and he had noise sensitivity, which I had always put down to a personal quirk but in a classroom situation it became difficult. When it was noisy in the classroom or at assembly it was especially difficult for him and he would get quite upset.

    Year 1 is when I decided to take him to be assessed. As he was becoming older it was more apparent that this was a situation that needed to be dealt with and I needed outside intervention. He wasn’t coping in a classroom situation and the demands placed on him daily seemed out of his capabilities.

    Through the school we were referred to a speech therapist and an occupational therapist. Both noticed things that were going on that weren’t quite typical. He becomes very agitated by noise, is light sensitive, has sensory issues (such as when another child would brush past him it would make him extremely upset).

    I took him to see a fantastic pediatrician who immediately told me that he believed he was on the spectrum. From there I was referred through the public system to have him properly assessed to see whether he had ASD. In Western Australia you need to have a child diagnosed by multiple professionals in order to receive confirmation that they have autism. This involves a pediatrician, a child psychologist and an occupational therapist.

    The school were fantastic and I had letters written for him by his teacher, the class aide, the chaplain and the school psychologist. This helped immensely when it came time for the actual assessment.

    As we were waiting for the assessment but had received a tentative diagnosis from the pediatrician, he was eligible to have an education assistant in his class to help him in day to day life. I’m so thankful that we had that opportunity because it did make a huge difference for him.

    It took over a year for us to book the actual appointment for his assessment. This is the public system though. You can choose to have a private assessment done but it is still a lengthy wait and costs close to $2,000. I was still paying for him to see an occupational therapist and speech pathologist so it wasn’t something that I was willing to do, especially because there was no guarantee that I would get an appointment any earlier than I would in the public system.

    We had his assessment a couple of months ago which was completely grueling. I personally had a four hour interview with Disability Services Commission. He was monitored in the classroom and also the playground buy two different ladies, a psychologist and an occupational therapist. They also read the letters from his pediatrician, teachers, speech pathologist and occupational therapist and took all of this into account in writing their report. However, maybe half way through the interview with me they told me he would absolutely be getting a positive diagnosis, there was no question about it.

    I’m relieved that it’s over but in a way it’s just beginning as well. From next year onwards he will be having a full-time education assistant in the classroom with him to help him. we will be continuing with speech therapy and occupational therapy plus he will be seeing a child psychologist fortnightly.

    He’s such a funny, dynamic little boy. He’s quirky and intelligent but just struggles so much with emotional and social issues. It breaks my heart to see him playing alone but at the same time I know it doesn’t faze him so I have to toughen up haha. I don’t have a lot of family support which can make things hard but I see it as us being in this together. We’ll cope with whatever is thrown our way.

    • 5 yrs, 4 mths ago

      Thanks for sharing, Belle. I agree, Tom and Bailey are very similar. Even in your story when others told you not to worry when he wasn`t speaking, that was said to me, too. But, instinct told me that something was not right.

      Also, when it came to Bailey not having friends in certain stages of pre-school and school, my heart would go out to him, but like you, I had to step back and realise that he didn`t mind, it was ok. Unlike my youngest who was so shy when he started school, but wanted to play with other kids. I told him to just ask to play with other kids. Didn`t I feel terrible when he came home and he said that they had told him no. (He has friends now, so it`s all good)

      Does Tom have a subject that interests him? Bailey first developed an interest in maps, he was drawing Australia and naming the capital cities in Pre-school. He also loved flags. He then began to immerse himself in the history of conflicts and wars around grade 3.

      Thankfully, he shares some of what I love, too. We currently watch Seinfeld together Friday nights, I`m glad he finds it as funny as I do because it`s been great rewatching the series with someone that hasn`t seen it.

      • 5 yrs, 4 mths ago

        He loves Minecraft, Scrabble and chess. He loves watching Dr Who, which I can`t stand but sit with him anyway lol

      • 5 yrs, 4 mths ago

        You`re a good mum. I know Dr Who is very popular, but I am not a fan.

      • 5 yrs, 4 mths ago

        My parents love it, they named me after a character lol. But I just can`t get into it

  • 5 yrs, 4 mths ago

    It’s wonderful to see discussion forums such as this.

    I have two nieces with varying autism issues and my sister works as a teachers aide with primary school special needs and I’m always interested to learn and hear about it.

    I can see how important discussion and support is – you don’t want to feel alone and isolated and I find humour helpful.

  • 5 yrs, 4 mths ago

    Hello! I am an adult on the spectrum! I’m happy to share experiences. I wrote a blog post about it a while back.

    https://rivetlicker.blogspot.com/2018/04/nearly-30-female-and-autistic-rivet.html

    • 5 yrs, 4 mths ago

      Thank you for sharing that, wonderful to read :). I hope you can write more when time permits as I find it invaluable, better than text books and journal studies! I can’t sympathise with my daughter as I have never experienced what she was going through so reading other people’s experiences is gold to me. I did a Positive Parenting workshop not long ago sand they played a video showing how some people on the spectrum can feel and experience daily things and it floored me, I had no idea. If I find it I will link it as they said they have it on YouTube

      • 5 yrs, 4 mths ago

        duality; every day is pretty much feeling everything at once or feeling nothing af all.

    • 5 yrs, 4 mths ago

      I`m going to grab a cup of tea and read this asap!

  • 5 yrs, 4 mths ago

    This is awesome!!! Thank you for creating this!!!

  • 5 yrs, 4 mths ago

    Belle, thank you for starting this thread, support is so important xx

  • 5 yrs, 4 mths ago

    My 14 year old has Aspergers. I knew something wasn’t quite “right” when he went from typical baby talk (he could say mum and dad), to no talking at all, when he turned 1. He would play with cars, but only to line them up and he also liked to do puzzles. Mostly he would just stare at the tv. To be honest, him being so content to watch tv was welcome when I was so sick with morning sickness (actually weeks of 24/7 nausea) when Bailey was 2.

    The youngest was such a terror, when he started crawling, he’d always mess up his brother’s puzzles. This turned out to be such a blessing because he seemed to cause Bailey to come out of his shell and start talking, initially to vocalise his disapproval, lol.

    Oh, and all that staring at the tv? Bailey was a sponge. He was looking at his brother’s jumpsuit one day and I pointed at the car print and asked 3 year old Bailey what it was, and he said “Go”, instead looking at the printed word. One of his favourite ads was the Harvey Norman ad. Lol. Watching tv, he learnt how to read.

    His speech wasn’t good, but with help from a wonderful speech therapist, by the time he started school, he was much more easier to understand.

    During primary school Bailey competed in 2 spelling bee finals in Sydney and won a Grade 5 public speaking competition in his school, he also got Dux of the school.

    Although I was so concerned about Bailey starting pre-school and primary school, I was beside myself with worry when he started High school. He’s always been good academically, but socially he struggles and is not comfortable with routine change. After the first week, he felt at ease, and of course, so did I. He would sit alone at recess and lunch, I really felt for him at first, but he was ok with it, so I decided I should be, too. A few months in and he was talking about his friends. I was so happy for him. Since then, he sometimes catches up with friends to see a movie, which I didn’t think would happen.

    Hmmmm, sorry that turned into a brag fest, but I just can’t believe how far he has come.

    • 5 yrs, 4 mths ago

      Omg that is such a wonderful story Indie and has me quite emotional, I love your positivity and that’s obviously been key to your boy achieving to the levels he has. I’m at the start of the journey and I love hearing about people’s experiences who are further along, such a great resource to pick their brains lol

      • 5 yrs, 4 mths ago

        Oh, I`m the same when I hear stories of other children, Duality. He`s had many struggles and questions that can be so difficult to answer. One of the hardest was when he was quite depressed about his life at age 12, fun hormonal stage. He said to me that he just didn`t know his place in the universe. That was tough. The school counselor was fantastic for him.

        I`m just glad that he now has come so much further than I had imagined.

        One thing that I had to learn was to let go of the guilt. I wondered where I had gone wrong. Of course, I know that him having Aspergers is not my fault, and it is actually just a part of what makes him the beautiful, sensitive kid that he is.

      • 5 yrs, 4 mths ago

        How old is your son/daughter Duality? (Sorry, I don`t know how to make your name bold on my mobile!)

      • 5 yrs, 4 mths ago

        They are 4.5 now do it’s early days as they were diagnosed at 2 years old (although girl later than boy)

      • 5 yrs, 4 mths ago

        Belleluxe to highlight members names in bold do 2x of the * stars and then write the members name with (no spaces inbetween) followed by 2x more of the * stars
        So like this ** insert members name ** but no spaces inbetween the stars. Hope that helps lol =)
        This is a fantastic thread by the way, great idea xx

      • 5 yrs, 4 mths ago

        Thank you!!

      • 5 yrs, 4 mths ago

        Hi Belleluxe below is a forum on fonts/typeface

        The description gives the basics like

        bold and

        italics

        which I mainly use but the

        big

        font is fun too!

        Forum is a bit long as it goes off topic at times but you might get some ideas – and be warned that misfortune8 likes to play tricks on us with colours and fonts!

        https://www.beautyheaven.com.au/forums/techie-talk/fontstypeface-to-use-on-the-new-look-forums?page=12#comment-4273826

      • 5 yrs, 4 mths ago

        Ah Kassalee you`re a gem!

    • 5 yrs, 4 mths ago

      Oh Indie, I would be so proud too 🙂 I think it`s awesome to celebrate the wins! When I was reading your post, I couldn`t help thinking how your son sounds exactly like mine. Very intelligent but socially behind. I`m really worried about high school

      • 5 yrs, 4 mths ago

        I found that it really helped to discuss all of my concerns (and his, of course) both to his primary school teacher and the Year 7 co-ordinator. Both were fantastic and did all they could to make the transition easier. It also helped that he knew he wasn`t the only student nervous, telling him that most kids are.

      • 5 yrs, 4 mths ago

        That is awesome. My son goes into year 3 next year and although there is a few years before high school, they do start in year 7 now which worries me because I still think of him as my baby!

      • 5 yrs, 4 mths ago

        This is wonderful, Indie. So inspiring and so helpful for anyone wondering how they can keep going.

        I`m so pleased you are being able to support each other, girls and share experiences. Well done to each of you.

      • 5 yrs, 4 mths ago

        Thank you for your kind words, Trish xx

  • 5 yrs, 4 mths ago

    Following! Thanks for starting this one Belle I have b/g twins 4 years old both diagnosed with ASD. Girl is different to boy as ASD in girls is different (more ADHD related behaviours). My boy is classic autism, with the lining things up, repetitive actions, restricted interests and self-harm or aggression when he’s in that frustrated zone. Girl highly vocal boy is super quiet, not quite non verbal but some days he is.

    • 5 yrs, 4 mths ago

      Wow, Duality, hard enough with twins, let alone both with ASD! Thankfully, there is so much help available in regards to schooling. The aides Bailey has had have been invaluable.

    • 5 yrs, 4 mths ago

      Wow, that sounds like a handful. I had no idea how different girls on the spectrum were to boys. My son is generally quiet but when something isn`t the way he likes it… he can scream the whole house down!

      Are your twins in kindy this year?

      • 5 yrs, 4 mths ago

        They were prems – 7 weeks early – so have a lot of catching up to do, they are size of 2 year olds so they are in a 3 yo kinder group. They are in a specialist kindergarten that mostly deals with autism so that is a blessing, no having to explain their behaviour and they give me valuable advice cos basically I was clueless (and still am at times lol).

      • 5 yrs, 4 mths ago

        Oh I know what you mean about being feeling clueless, it`s a constant learning curve. The kinder group sounds great! My son went to daycare and it was a real struggle. I would get calls almost every day asking me to come and collect him. School is a lot easier.

  • 5 yrs, 4 mths ago

    I’m commenting so that your thread will show up in Latest, Belleluxe. Excellent idea and I’m sure it will help everyone who is interested. Sharing can help, even if it’s just to know you’re not alone.

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