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Hi, I'm new

kirstylu

Hi everyone, I just found your site, my 5 year old DS is on the brink of being diagnosed on the spectrum somewhere. He's had 3 assessments in school with the educational psychologist, the latest yesterday he spoke to my son's teacher and say's he feels he's definitely autistic, on the spectrum somewhere, and wants him seen as soon after xmas as possible by the autism team. Waiting on a phone call/letter as he apparently needs our permission to refer him on. 

I can't help but feel guilty, I know really I shouldn't, but we can't help our feelings hey. 

Anyway, hi :D 

  • One thing you must remember is that your child will grow up, and it might be then that a formal diagnosis from a young age will be a great help.

    Hopefully your child will be able to cope well with their autism. But, there is no way of knowing and adult services are difficult and patchy. If there is a diagnosis from a young age, and therefore you have been able to access services throughout your child's life then things will probably be easier. Austism is a lifelong condition.

    As an adult with Aspergers (formally diagnosed) I would say that the most important thing is that you arrange your child's life so that they have a support network of friends and/or family that understand and accept them, and who will be there to help when needed, and (if you are able to) arrange for them finacially.

  • hi again - yes, over time we all get used to life being different - it becomes a different kind of "normal" as you put it.  With me + my son, getting the diagnosis, then the statement, meant he went to a school for children with autism.  At the time I didn't realise that that didn't happen or didn't happen without a battle for some other families.  That made a big + positive difference to both of us.  V small classes, speech therapy, teachers who understood.   We also applied for and got dla which was helpful.  He also became entitled to an amount of respite care which he enjoyed + which gave me a break.  When he left school he wanted to go into supported living.  Having the diagnosis made him eligible.  To cut a v long story short ultimately he was able to get autism specific carers + has also been able to move to an environment more suited to his needs.   So all I'm saying is this is what helped us in our particular situation.   

  • Thank you for your reply, I will have a look through the site. I can't begin to imagine what help they could possible offer us. I can't imagine after 5 years there's any help I could need from them. That maybe because I've normalised our life, it is how it is, he is how he is, he's not really bad with it, so I wonder how helpful having an official diagnosis could be. I guess these are all things to discuss when we meet with this team. I think again normalising it blinds me to a lot of what his teachers/the psychologist see's which makes me think there's less of an issue. 

  • hi kirstylu -welcome.  I think lots of us will recognise that "guilty" feeling, despite knowing better logically.  For the record I'll just say that autism has a genetic component so please don't think it's something you did/didn't do.  A diagnosis means you can hopefully access the services your son + family need : social services, education, DLA.    The nas site is full of useful info so it's a good place to brush up on your knowledge of asd + how it affects your son as an individual who also has autism.  Just chip in when you want to.  bw