Follow up after diagnosis

JimJams

Does anyone with an autistic child receive any follow up care from the dept that diagnosed the condition. I dont really know where to go when I have any questions about his autism and how it is progressing etc, I just feel if you are diagnosed with a condition you are normally followed up at a clinic throughout the course of your condition/illness, where do you go with children with autism, it is your GP? then what?

toast

So you don't have a community paed to follow you up? Surprised if you don't have that as II thought that was generally the case. They would then deal with any developmental / behavioural queries and make any neccessary referrals. Also deal with any ongoing medical concerns that may be related to the diagnosis (ongoing / prolonged constipation for instance) GP is more for all the other stuff - general illnesses, emergency prescriptions, routine prescriiptions as per instructions from the paed.

Are you in the UK? What was your path to diagnosis?

JimJams

gp referred us to child development centre, who referred us to community autism team, they diagnosed autism then all discharged us to the hands of the school (which is an autistic unit), no follow ups with anyone

Natasha Brown

we get review with paed evey year - but when he was young it was every three months or every six months - what ever we wanted really.

how old is child and who referred?

if school age - get into school and discuss next steps with SENCO.

if pre school then GP/HV/pre school adviser in local authority.

also call NAS and ask about anything local going on.
eg early bird courses for pres chool child

local authority may also have autism adviser you could speak to.

thing is autism diagnosis is about what is done next to help at pre school level or at school. it is what happens in the home/school that is important - so the input you get for that. but you could also call/email/write to the people who diagnosed and ask for suggestions

JimJams

I think I will write to the community autism team to ask about follow ups
thanks for all your comments

Teresa

I know that in the area where I live the clinic handling most diagnoses of autism has concentrated largely on diagnosis so as to reduce the waiting time. They do not seem to offer follow up appointments automatically. (Although I think they should!) I have asked for follow up appointments and had no problem getting them. I think you just need to ring wherever your child was diagnosed and tell them you would like regular follow ups. You may have the choice of the paediatrician coming to your child's school, if that would reduce anxiety. Sadly it's probably a case of don't ask, don't get!

JimJams

I think I will do that thanks teresa, I am sure it will be a case of dont ask dont get, its unbelievable that you get handed a diagnosis of a condition you know nothing about and then have to learn all about it yourself as quickly as possible and have no one to ask if you are having trouble understanding things, if you were diagnosed diabetic you would have regular check ups etc. The world of autism is bizarre