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What on earth is 'Genetic investigation'???

Finnian

Hello, my 7 year old boy is currently going through the assesment stages. I recieved a letter that may as well have been written in German!! I don't understand the terms used., anyone know what these are? 'ASC pathway'? and 'CAF'? Also, they are asking for an appointment with him for 'Genetic investigation'?

not even understanding the letters they send has left me feeling really frustrated...How can I make the right decision for my son if I have no idea what they are on about??!!!! Thankyou everyone

 

Emma.

  • yeah i get letters like that where they cc you a copy but its not directed at you. I think most parents do. I would still want it explained so i could understand it!

    sam

    x

  • also, thankyou very much for all the advice recieved so far....as I dont have a clue what im doing and it feels quite scary!

  • Well, even more confusingly, the letter isnt addressed to me, but they sent it to me. Its actually written for the head specialist at 'honeylands' in exeter. where i assume children are assessed....  Heres the letter..... from 'integrated childrens service assessment team'

    Finnians case has been discussed at our multi-agency hub meeting and it was agreed that he should go on the ASC pathway, as well as initiating a CAF, Mandy mills, specialist neuro developmental lead for integrated childrens services, has asked me also to request that you offer finnian an appointment for genetic investigation. I have enclosed the gp referral and a SALT report.

     

    now if THATS not confusing i dont know what is....i dont even know who to ask as it isnt addressed to me :(

     

     

  • Hi,

    I may be total wrong but I remember when my son who is now 17, being genetical tested, by a blood test and taking a family history from me to rule out and genetic reasons for my sons conditions. His blood test were sent to london (i lived in east sussex at the time) for specialist screening. So it may be something similar.

    I think it is shocking that you recieved a letter like that. Do you get on well with your gp? I would put n appointment on to discuss the letter with them see if they can help you. If they cant they should have direct numbers to contact the people who have. Its often easier to understand things fce to face. which is why I suggest an appointment.

    Good luck and let us know what it all means!!

    sam

    x

  • Hello Finnian

    It's my understanding that ASD (Autism Spectrum Disorder) and ASC (Autism Spectrum Condition) are terms meaning the same thing - ASC just seems to be the latest terminology. They both cover the full spectrum. It would definitely be worth asking the professionals involved what they mean by these terms - I would write a list of things you want to ask before you see someone next because there's bound to be a lot.

    Good luck.

    Sandra - mod

  • Well no-one has ever explained anything to me properly....maybe its time to be a tad more forceful and get the awnsers I need. Hmm maybe autistic spectrum 'condition' is less severe than 'disorder'...?

    Its silly to sit here guessing, i'll see what I can find out

    Not to happy about the 'testing' there does seem to be something quite 'guinea pig' about it, but maybe i'll change my mind once I have more info.

    I have no idea who is supposed to be 'assessing' my son...They say it is a team and not one individual, I can see why they do this, but it does complicate matters for the family. We have never seen the same person twice, as they dont stay in the same job for long....all ive wanted...for 4 years now...is to get some straight awnsers from an actual person...still waiting.... I shan't give up, just get more forcefull! :)

    Thankyou for your reply, its definately helped!

  • Hiya, if I were you be wary of the genetic investigaton until you can have someone sit down and explain it in laymans terms. The best I can understand it is this:

    Scientists believe there may be a genetic link to ASD. They may be asking to take blood samples to find out if your son has an 'ASD' gene or something like that.

    ASC seems be mean 'Autistic Spectrum Condition'. Never heard of it as that before but hey, who knows?

    CAF may stand for Common Assessment Framework, probably involving tests for your son at different dates to see how he's 'progressing'.

    Sorry I can't be anymore help but I'm just a kid with access to Google. My main advice would be to see whoever is meant to assess your son and MAKE them explain this, don't just sign up and go along with it. Theres a lot of worry about the government using people to get data without the individuals best interests at heart.

    Good luck :S

    Katie

    P.S. If a moderator can explain that'd be awesome, maybe try their helpline here on the site?