What I Wish I Had Known Sooner About My Child’s Global Developmental Delay Diagnosis

At my twins two year check up with the health visitor they were flagged for concern, they were very behind in all areas. It was a long process (a story for another time) but eventually after a week of tests at the John Radcliffe in Oxford during a Multi-Disciplinary Assesment (MDA) they were given a diagnosis of autism, Sensory Processing Difficulties (SPD), non verbal and Global Development Delay (GDD).

After 18 months of being left in limbo being told something is 'wrong' with your children but no indication as to what was going on, the initial outcome was a relief. But it was also a whirl wind for me, we had gone from no one telling us anything that they suspected might be going on with the twins to having all of these confusing words and abbreviation's on a piece of paper that, honestly, I didn't understand.

GDD has always been apart of their diagnosis, apart of how I knew to describe the challenges and struggles they faced. I wasn't made aware that GDD is no longer a valid description of children after 5 years old and can actually hinder your chance of receiving help in different areas like Disability Living Allowance (DLA), Direct Payments and more.

Last year during a Team Around the Family (TAF) - a meeting where professionals who support all of the children/family come together, the lady from the Early Help team began explaining about help that the twins may be able to access called direct payments. This is where each child is entitled to funded hours to hire a Personal Assistant (PA) but they needed to be under a Child in Need plan (CIN) and to do that they had to go through a Disability Checklist. One of the critierias (at the time I think its now changed slightly) was that the child had to have either a moderate or severe learning disability and they do not accept GDD. She explained I would need to get in touch with my paediatrician to change their diagnosis.

This was all new to us and seemed like a lot of hurdles to be jumping through, at this point I was still unaware that a GDD diagnosis after 5 is no longer a delay. When I emailed the paediatrician she came back confused and I spoke to my friend, who's child is under the same paed and she was having to do the exact same thing.

We are the lucky ones because we are still in contact with our paediatrician, as the twins are at a special needs school they get reviews every 18 months or so. As I got deeper into thinking about this massive change in diagnosis that we hadn't learn about for years I thought how many parent carers are out there who don't know about this.

I recorded a TikTok and posted sharing our experience, wanting to inform other families who have children with GDD a diagnosis that is outdated and puts them at risk of not being able to access the help they need and deserve.

I posted the video on the 17th April 2025 and it currently has over 31,000 views, 315 saves and 95 comments with parents of similar unawareness and some horrifying stories and its growing everyday still!

One mum had a child who was diagnosed only with GDD, is 18, about the leave her special needs school and has no other diagnosis. This comment haunts me, the neglect, the overwhelm of sadness I feel for this family who are entering the world of adulthood - which is scary enough for a child with additional needs but without the correct diagnosis is terrifying. And that could be me or you, the only difference is that we have found out sooner.

Now, I am no expert in this area, this is just our experience and what I have heard from talking to other families. It will depend case to case on the diagnosis after GDD, it will depend on who your child or young person was diagnosed with to where you find the answers, if there needs to be an assessment or not and it will also depend on the county you live in.

I'm sorry I can't provide anymore concrete help for you, but as we could have been having access to more help for years, I want to make other families aware of this sooner.

Is your child diagnosed with GDD and over 5? Will you be seeking an updated diagnosis?

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