WHY I WANT MY LITTLE BOY TO BE DIAGNOSED WITH AUTISM

You probably read this title & thought WTF, but keep reading and you’ll understand why I want my little boy to be diagnosed with Autism.

We’ve been going through our Archie’s Autism Journey for almost a year now, having numerous appointments (far too many to list), seeing numerous specialists & doctors. Archie currently has 12 people involved in his care, two paediatricians, four speech therapists one who specialises in Autism, a Health Visitor, a SENCO worker, a key worker and he’s also seeing specialists at the hospital in Orthopaedics, ENT & a Dietician. He has been ‘unofficially’ diagnosed with Autism, meaning that the specialists involved in his care have agreed & are treating him for Autism but he’s too young for an official diagnosis.

Yet I still get told by people we know that Archie can’t possibly have Autism, you might want to have a nosy at my 20 Things Not To Say To A Parent Of A Child With Autism, you wouldn’t believe some of the ridiculous things people say.

I want Archie to be officially diagnosed so that I have it in black & white when people tell me I just need to socialise him more, or he just needs to get used to certain textures. Archie has a sensory processing disorder, this affects his brain & functions, this has nothing to do with my parenting skills.

I want his official diagnosis so they can’t deny it any more, so they can’t tell me I’m wrong. Autism is so complex, for someone who sees my child for an hour here & there probably won’t see how his Autism affects him. I’m there all day every day so I see all his traits. There wouldn’t be so many people involved in his care if it was all in my head. Someone recently told me that they’ve never seen him have an issue with the texture of his clothes. Well no, you won’t do. Why would I keep him in clothes that distress him?

I know I shouldn’t need a piece of paper to satisfy other people but it is so draining to have to constantly battle with people every day who have no idea about Autism. Just because you can’t see it immediately doesn’t mean it’s not there, it just means you haven’t spent enough time with my beautiful little boy to see it.

Can you relate to this? Have you been in a similar situation, I can’t be alone in thinking like this.

 

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39 Comments

  1. August 21, 2015 / 10:23 am

    Toni, once again a brilliant post about Archie! I completely relate! We finally have Hayden’s ‘diagnosis’ appointment through for November after battling for 3 years to get to this stage. I have been called ‘too soft’ and a bad parent by many, including most of my family members who don’t see him very often. On the surface I have a naughty little boy that should by now be confidently using cutlery in a restaurant, should be able to walk alongside me down a road without having to make sure he is holding the pushchair, who should have friends and be invited to parties, who should be fully potty trained and without a dummy. But that’s not the case, I am desperate for this diagnosis so I have a concrete reason for this behaviour! Maybe then people I know will stop judging me! X
    Clare recently posted…Would understanding learning styles help you teach your children?My Profile

  2. August 23, 2015 / 7:29 am

    I can totally understand what you mean. It’s not really the same but when Finley was a baby I knew he had reflux, but they wouldnt diagnosis it. Even though I knew I just wanted them to say – this is why he crys, all the time! Thank you for linking up to #justanotherlinky xx
    Something Crunchy Mummy recently posted…My Sunday Photo 23/08/15My Profile

  3. August 23, 2015 / 7:34 am

    no one knows your child better than you! Excellent article, you sound like a fighter x
    Sarah recently posted…His 2nd BirthdayMy Profile

  4. August 24, 2015 / 10:34 pm

    I hope you get the diagnosis you need soon. I have to say though, people will stick their nose in regardless.. we have a diagnosis of ASD and I still get comments about ‘growing out of it’, some people just think they know it all, but no one knows better than you x
    BloggerMummyLauren recently posted…ASD Parenting – Back to School BluesMy Profile

    • May 17, 2016 / 8:09 am

      I know it won’t put an end to all the comments but at least I can say it’s official. I don’t know why some people feel they have the right to say those kind of things to us x
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  5. August 27, 2015 / 8:36 am

    I completely understand, although my experience was very different. I was basically in denial up to the point where we got the diagnosis. Of course I wanted to get a diagnosis, but I wasn’t expecting it to be autism,, despite all the signs pointing that way. My thinking has changed an awful lot now and it feels so strange looking back. Good luck in getting your diagnosis. #justanotherlinky
    Alison recently posted…Starting School for the Disorganised & a GiveawayMy Profile

    • May 17, 2016 / 8:14 am

      Thanks Alison, I guess we all deal with it differently. We’re much further on our journey now but still on the waiting list for a diagnosis x
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  6. August 28, 2015 / 7:54 pm

    I can’t relate to it but I do feel for you. It is pretty annoying when someone starts blaming your parenting skills when it’s not even that. Such a shame. Hope he gets diagnosed asap for you.

    Thanks so much for linking up with #justanotherlinky
    Beth recently posted…Friday, 28th August 2015My Profile

  7. September 15, 2015 / 11:22 am

    How old is Archie sweets? I can’t believe they’ve said he’s ‘too young’. Oscar was diagnosed at 2 years 10 months. A can’t be that much younger? Sounds like you’re going through the wringer atm. Hope it’s all coming together for you guys xx

  8. November 21, 2015 / 4:39 pm

    Just recently yes. They decided that my son didn’t have autism (didn’t tick the right boxes I think). And so officially he’s not diagnosed apparently. It was never a problem as he has a statement, DLA and a great school. But things are happening lately and I noticed that the box that says disability is empty – I was like why – and it is because they said it isn’t autism. When I showed the person concerned she said ah yes they obviously thought he was too young to diagnose as being autistic – because what it basically is is a description of autism! Best of luck with it all – and either way don’t let others who don’t know make you doubt what you do know. My oldest does have aspergers and even with the diagnosis people try to say you (I) are wrong.
    Pinkoddy recently posted…Sensory Processing Disorder and Mainstream SchoolMy Profile

    • May 17, 2016 / 10:02 am

      We’re currently trying to get an ECHP so we can decide which school is best for him & who can support his needs but our LA won’t progress with a statement until he’s further through the system 🙁
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  9. May 13, 2016 / 3:27 pm

    Really great post. I have depression and anxiety and as odd as it sounds, I LOVE having my diagnosis. It means I know for sure. For a few years I really thought I had anxiety, but I couldn’t tell people or they would dismiss it until I had a doctor confirm my beliefs. Having a formal diagnosis also gave me the confidence to know how to overcome it x
    Zoe Alicia recently posted…Mindful Journaling: 10 Beautiful ThingsMy Profile

    • May 17, 2016 / 10:05 am

      I think that’s it, having a professional confirm it means that it’s official, it’s not just us trying to self diagnose or other people dismissing our concerns x
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  10. May 14, 2016 / 3:51 pm

    I don’t have an experience of this myself but I really feel for you, thanks for sharing and I hope you get the answers you need soon x

  11. May 14, 2016 / 4:20 pm

    I know exactly where you are coming from. It must be so hard without a diagnosis to get the support you need.
    Mellissa Williams recently posted…48 hours in NashvilleMy Profile

  12. May 14, 2016 / 5:16 pm

    I’m sorry to hear what people have been saying to you, that must be sooo frustrating. You do know him best as you are mum and been there all the hours xx

    • May 17, 2016 / 10:08 am

      Thanks Sabrina, that’s just it. I know him, I’ll the one thats always there so sees everything, people who just dip in & out don’t have a clue x
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  13. May 15, 2016 / 5:12 pm

    Hmm, I’ve had a very different experience to you, almost opposite intact. I know my son is NOT autistic, yet when he was just 2 the then pre-school (who we have since found out were truly awful to him and other children) went through everything from ADHD, ASD to eventually try and class him as aspergers. All total rubbish, which his doctors, school and everyone else backed up… unfortunately people like this pre-school owner (who has “self-diagnosed” children so often she’s known to the local authorities!) make it increasingly difficult for people like you, who need the diagnosis to HELP their child, to get the diagnosis because people think its an excuse. I hope you get what is right for your little one, you hold strong because NO ONE will know him like you. H xx
    Harriet from Toby & Roo recently posted…#SaturdaySiblings linky #2My Profile

    • May 17, 2016 / 11:25 am

      It really is, we’ve had to wait so long as they need to rule everything else out first before submitting us to the waiting list for an ASD assessment, I’ll keep fighting for it as all the professionals all agree we just have to play the waiting game x
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  14. May 15, 2016 / 11:53 pm

    Oh why do we constantly have to justify our thoughts? Surely most professionals would agree that parents tend to know best about their own child. I hope you get the support that you are yearning for and that gorgeous Archie continues to flourish under your care x

    • May 17, 2016 / 11:27 am

      That’s the issue, the professionals involved all agree that it’s Autism they are just all tied in red tape as the waiting lists are just so long! He’s an amazing little boy & I’ll make sure he gets the absolute best x
      gymbunnymum recently posted…THE NEWS WE’VE BEEN WAITING FORMy Profile

  15. May 16, 2016 / 3:12 pm

    Aww Hun. I can’t relate to this specifically but I can totally understand where you’re coming from. You know your child better than anyone. It must be so frustrating for you x
    Kerry Norris recently posted…A Food Journey At The Celtic Manor ResortMy Profile

  16. December 11, 2016 / 6:19 pm

    I demanded a diagnosis early so we could access services. If i didn’t it could have been a year or longer just to get on waiting lists that were already several years long. The services are a big help. You’re right to want a diagnosis. Also, I have learned not to second guess my wife’s instincts when it comes to our son. If she says something’s wrong, it is, 100% of the time, without fail. A mother knows.

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