This is my Child – Undiagnosed

This post is in conjunction with The Mumsnet This is my Child Campaign is about busting myths and raising awareness.

sensory seeking with paint

When he was 2 years old he started to demonstrate “traits” of Autism, some reminding me of his oldest brother.

They weren’t anything we couldn’t handle, we’d had 14 years of living with Aspergers at this point. With good routines put in place (such as what happens at dinner and bedtimes) and techniques we probably aren’t even aware we were doing. But I started the ball rolling. I asked for him to be assessed, diagnosed and possibly helped.

He was simply doing things like not unclenching his fist in order to drink from his cup. Now over 2 year on he still does not have a diagnosis.

Sensory seeking with cake mix

I think it is time to stop the myth that parents need to prove it is not their parenting first. The amount of people I hear asking for help for their child and they have to get through a barrage of are you doing this and that. It doesn’t help that I’m not a conventional parent. He was breastfed until he was 4 years old and has never had to cry himself to sleep. But the first things that were mentioned were the fact that he would be much better if he could get to sleep – and had I tried him on the naughty-step? Trying to argue that my son was not naughty, especially as he was at that kind of age, that he didn’t actually comprehend what he was doing, so I refused to punish him, was a bit of a loosing battle.

The wait and see approach can be dangerous, as it can lead to seeing that they do need help, but fall further behind their peers.

Thankfully our son did have help. He has a mother that wont let him get lost in the system, and the confidence to say actually it’s not my parenting (although I do still wobble, it’s hard not to when it’s implied so much), a fantastic supportive playgroup, and health professionals who (mostly all) listen and trust my judgement. He has had fantastic support from the local swimming baths, where he has had 1:1s, for their time, patience and understanding of who he is.

Myth 2: That parents should not receive financial help to assist their own child (see my post here).

Myth 3: That a child has to have a diagnosis to get help. My son has DLA and a Statement of Special Educational Needs without a diagnosis.

spd tactile touch

Myth 4: If it isn’t Autism then it isn’t a disability – it seems to me that if your child does not tick the right boxes, get the right labels then it is harder to access the right help. Think this is also to do with the postcode lottery. Just never give up, if there are methods that help your child then who cares what the label is or whether they have one.

Myth 5: Children with learning difficulties are stupid. My son has a developmental delay and is years behind his peers in some areas, but in other areas he’s exceeding beyond them, he isn’t stupid he’s just different. My oldest has Aspergers and did his GCSE maths a year early – gaining an A* see how well he’s getting on (here).

SPD noises

Just a few things about him:

He is funny

He is loving

He is kind

He is caring

He is easily confused

He likes to touch things/people

He doesn’t know when he shouldn’t do things

He wants friends, and to be your friend

But he wants to do things his way

He likes control

He doesn’t like certain smells, or textures.

He gets easily anxious. He doesn’t cope well with change.

He likes spinning and being upside-down.

Related Posts

Wear it for Autism

Sensory Processing Disorder

11 thoughts on “This is my Child – Undiagnosed”

  1. love this post! I hope you are able to get a dx for him, so that it can open more doors to support for him if needed! all the best to him and your other children, looks a lovely cute boy 😀

  2. Great post! You’ve addressed some common myths there! My son is also undiagnosed. Have you heard if Swan UK? They’re a fab project that support families living withundiagnosed conditions. There’s a few with SPD on there too xxx

    • I follow them on twitter but don’t think I’ve had much interaction with them. Thank you will make more of an effort to check it out.

  3. Great post. I can relate to so much of what you wrote. So many of the things you wrote are true for my son. I think it is true that parents get blamed so many times, so much for things that are really not a blame issue. I think it is important to get diagnosed, but nit the most important thing. It is good to have a diagnosis for some things, like finding your place in the system, but not necessarily for treatment. We get treatments more because our school is fab, than because we have a formal diagnosis. It is all so complicated anyway.

    Just don’t wobble on the “bad mum” thing. You are clearly not.
    Oh, and love love love the photo with all the stuffed animals! x

  4. Love this post, and in particular your positivity – sure that helps you to help your son as best you can. Ridiculous that we have to fight for it all though, you’re right. He looks gorgeous btw 🙂


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