What can I expect? Our neurodiverse journey started 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🩷

It's worth exploring all options rather than focusing purely on potential ND.

GPs/Paediatricians would usually want to know:

• Did anything upsetting/traumatic happen around the time of the behaviour change
• Changes to family dynamics prior to or around change
• Family history of ND
• Any infections ? These can sometimes cause behavioural and mh changes in kids, look up PANS PANDAS
• Underlying medical issues etc
• SAL needs or Learning difficulties
• Attachment

14m is very young to be diagnosed with ND, unless incredibly severe presentation and evidence across a range of settings.

Take a breath. It is normal to feel overwhelmed. It is easier said than done but try not to focus on the ‘what ifs’. They only serve to cause you further anxiety.

The process varies area to area. What is common is they will ask a lot of questions - family history, developmental history, about pregnancy, your worries… They may want you to complete questionnaires. They may do blood tests. DS may be seen by other health care professional as well as a paed such as SALT, OT, physio, clinical psychologist. They may refer to other services such as Portage. A brain scan isn’t always done or necessary if the probable diagnosis is ASD unless there are concerns over co-morbidities or other causes.