Diagnosis of GDD without assessment - advice please

[beastie77]

Hi All,

I am looking for other people's experience with a diagnosis of global developmental delay (GDD) based on a 30 minute observation by an experienced consultant.

My son, recently turned 3, had an appointment for a Ruth-Griffiths assessment today. He refused to participate (because we have seen a lot of people recently and he seems to be getting fed up) so she observed him interacting with Dad instead. My son has fairly obvious fine and gross motor problems - rolled late, crawled at 14 months, took first steps at 19 months. Still clumsy but runs and jumps (with plenty of accidents), OK to go up stairs but not down, feeds himself but messy etc etc. He is very hypermobile (particularly hands). All visuo-motor skills are poor (e.g. stacks only 4 blocks, very poor at shape sorting, peg puzzles). Speech is behind (only now stringing two words together) but is growing up trilingually. He is hard to understand in all languages. His comprehension is behind, too (will follow one-step instructions but will not go and get e.g. shoes - although will look at them!). His speech is better in English than in the other two languages which are harder to pronounce. He will happily and correctly translate key words from one language into English (so has at least some understanding). He is social, good eye contact, initiates, points and shares enjoyment but his play skills are terrible. He has some pretend play though (e.g. will feed his stuffed toys, pretend potato is a phone etc but it is quite "samey"). He mostly just wants to read books with me and will engage in the stories (e.g. will name animal that will follow on next page). Other favourite activities include rough housing and spinning with his head tilted to one side.

There are no dysmorphic features. His NIPT test was clear (prenatal chromosome screen).

I now wonder about stories of people who ended up with a diagnosis of GDD - I am confused because based on the literature it seems to be "largely the same" as intellectual disability (ID). And sometimes the NHS seems to use it as a place holder until a diagnosis of ADHD, ID, dyspraxia/DCD or whatever can be made with certainty.

To me(!) my son looks dyspraxic (not cognitively impaired). Are there any parents with some experience/similar stories? I'd love to hear them...feeling rather down...

[100cc]

Hi Beastie

My son has been diagnosed with GDD recently. He is 5.

He is on the so-called pathway to ASD assessment but no sign of any appointments yet and the local ASD staff refuse to narrow down when they might be .

As processes move on so slowly in this country (NHS and evidence-gathering for an EHCP) we took him to another country (where my wife is from) for an evaluation. A psychiatrist saw him twice for an hour each time and a psychologist assessed him for over an hour. Based on this, and various blood, wee and poo tests, the psychiatrist diagnosed GDD.

Although he has some behaviours which seem to fit some of the autistic criteria there are more of the criteria he doesn't fit, so GDD sounds about right to us.

He started crawling, walking and talking at about the "normal" time but even so his speech, fine motor skills, and socialising are delayed and his attention span is short. He's also bilingual which I think is an asset; currently his English is better than the other language.

He is making steady progress. His school (mainstream) is very good, within the limits of government policy and funding of course. We have employed an ABA consultant to help him and this is working. The school has incorporated the consultant's suggestions.

Also we are trying the Nemechek protocol; perhaps some of his progress is down to this? Who knows?

Overall I wouldn't get too worried about the diagnosis, the fact your son needs help in certain areas of development and behaviour is the main thing. The sooner you can get appropriate help the better, but be aware that the bureaucratic wheels in this country turn very slowly.

As you mentioned other languages being used in your household is going abroad for assessment/ intensive therapy an option?

Hope all this helps in some way

[dimples76]

GDD is just a description of a child's condition (that they are delayed in 2 or more areas of development). It is not a diagnosis and does not explain the cause of the delay. Some children will 'catch up', some will remain undiagnosed (like my son) most however, will acquire a diagnosis e.g. ASC, ADHD, genetic conditions etc.

I think that the key thing is to access early support to promote development. If a Portage service is available in your area I would highly recommend it.