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Diagnosis.... What now?????

Kerry B

Hi All,

I am very new to all of this so please forgive me if I come across as uninformed or ignorant! 

My 14 year old son was finally diagnosed with aspergers last week, he also suffers from severe depression, anxiety, OCD, aggrophobia, and has a number of sensory issues which impact on his diet so he has some kind of eating disorder (this has not yet been labelled!) The last few years have been horrific - I have had to battle with just about every agency and professional you can think of to get them to listen and help us. He was so depressed and anxious that he barely left the house and had no education for the whole of year 9. 

I did all I could and managed to get him into hospital education, get DLA and a special educational needs statement without the diagnosis. So things have already improved for him, however I have no idea what happens now we actually have a diagnosis?  Do I need to contact social services for a needs assessment? Do I need to contact DLA & inform them?  I was reading another thread on here that said that a diagnosis of aspergers rather than autism can affect the level of benefit and support that people receive - my sons diagnosis is still in draft form and we have a post diagnosis meeting later this month with CAMHS and they have asked if I am happy with the label of aspergers rather than autism (due to aspergers not being used for much longer) at the time we discussed it and I thought it would be better but after reading some discussions on here I am no longer sure if I should say that I would prefer the label of higher functioning autism (if that's the correct thing??) 

Any advice on what I need to do now would be really appreciated! 

  • Thank you Intenseworld your advice is very much appreciated :-) 

  • Unless they know something about the pending revisions to the ICD-10 they are not speaking correctly about Asperger's not being used for much longer.

    In the American DSM-5 Asperger's was dropped but we use the ICD.

    You could ask them to label as autistic spectrum condition/disorder if you prefer, as that is what Asperger's is.

    Yes, apply to DWP for DLA and ask for an assessment of need for yourself as his carer which may trigger respite.

    "High functioning" autism is not actually a diagnostic label, but "high-functioning" is commonly used now even by clinicians.

    Functioning is not only about IQ it's about so many other traits that can affect the individual's life negatively so it's a misnomer.