What can I expect? Our neurodiverse journey began today

[Yellowduck1993]

Hi,

Hope I’m posting in the right place.

I have the most beautiful, amazing little boy called Jack. He is 14 months old.

Ive always had a gut feeling something was off. I’ve had 2 children previously and although I’ve tried hard not to compare he has definitely been very different.

When he was around 9-10 months old we had the expected mama and dada, we had “uh oh” as he threw his dummy at us 😂 we had pointing, waving and sooooo much clapping. We had smiling, laughing, cuddling, kissing, eye contact galore!

Around his first birthday this all stopped. Gone. Completely. No eye contact at all. No babbling, no clapping, no waving, no pointing, no smiling and no laughing. He’s like a different child. The old child seems lost. I am heartbroken. Not because of what we have but because of what we’ve lost. Where has my happy little baby gone? I adore my boy so much but what has happened?

Ive taken him to the GP armed with videos of his new behaviours and he has been referred to paediatrics because of this regression and current behaviours such as hand flapping, head shaking, and verbal stims.

What can I expect now? What will they do? Am I wrong to think he should have a brain scan? What if there is a tumour or something?

I apologise if this post seems like I am sad. I am coming to terms with this and not sure what to expect or what’s going to happen.

One thing is for sure I love my boy so much no matter what comes from this. I’m concerned that this has been caused by something medical such as a brain problem and am wondering what will be investigated. As long as he is healthy we can deal with anything.

Looking for other people’s experiences.

thanks for reading 🩷

The SEN board may have more knowledable poster.

Thank you I will post there also

Hi there,

I work in this area and I complete neurodevelopmental assessments as part of an MDT with younger children under 5.

what will happen is likely to vary by area depending on your local commissioning structure, but broadly speaking you will see a paediatrician in the first instance for a review. In this appointment they will ask you lots of questions about your little one’s development and they will consider neurodiversity but also whether there may be a neurological explanation for difficulties. If there is an indication for this, you would be referred for an MRI. Indicators include frequent vomiting, fast growing head circumference , seizures, unusual /suddenly clumsy gait amongst other things. What you describe does sound more aligned with a regression that we might expect to see between 12-18 months which is related to neurodiversity, and more specifically autism. For ASD assessments scans are not offered as standard unless there is a good rationale- so maybe that there are other indicators such as fits/vomiting.

if the paediatrician feels confident that further neurodevelopmental assessment is warranted you would be put on the waiting list for an autism assessment, and possibly another assessment to see where their learning and development are. It is not advised to assess for autism before 18 months and the child has to cognitively be functioning at the level of an 18 month. Alternatively, if they don’t feel confident they may invite you back for review in 6 /12 months before making decisions about onward referrals. An autism assessment for a very little one involves a play based assessment with a psychologist or other qualified professional plus a parent interview plus info from nursery and an observation in setting.

Following this, depending on the outcome you will be supported. Some areas are better than others. Where I am based you would be offered post diagnostic groups (if your family received a diagnosis) and you would be eligible for psychological support/SLT/OT and an EHCP plan when your child was in school to identify learning support needs. It’s great that you are starting your journey so soon. I would strongly recommend requesting some support to have a think about expectations for development and having a chance to speak about that transition and sense of loss if you did get a diagnosis. A lot of people never get that support because it is difficult to articulate, but I feel it is essential for families. Lots of people end up falling through cracks- make sure you research everything that is available in your area.

good luck OP, regardless of what happens next your child will always love you- he will learn to show it in other ways and you can rest assured that he will always change and improve over time in the same way as any other child would, he might just not be following the traditional trajectory and you might be celebrating other skills and changes.

Wow, this is an amazing reply! Thank you so much for taking the time to go through this with me.

I am already trying to get in touch with other mums in my area that may be going through the same.

Luckily he still likes a cuddle. I hope I don’t lose this part of him as I couldn’t imagine him not wanting to cuddle me💔 I felt like I was awful for feeling sad about losing him x