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Late diagnosis

Becky67

Hi, I'm Becky and I have a 16yr old son Nathan, who has Aspergers & epilepsy.  

From the age of 2-3 I always thought he was different as he never joined in to play with other children & if I invited any round to the house to play, he'd just carry on what he was doing & totally ignore them as if they were invisible.  As he's an only child I thought it was something I was doing wrong.

When he started primary school the teachers told me they thought he was on the autistic spectrum, but when I got in touch with the Consultant Paediatrician to tell him what the teachers had said he just said he didn't believe my son was autistic - and they don't like to 'label' children.

Fast forward 11 years, that specialist has now retired and the new one acknowledges my son has Aspergers.  I'm annoyed as my son only got 2 pass grades out of 9 in his mock GCSEs - he'd have been entitled to a reader & a scribe if he'd been diagnosed earlier.  I'm so stressed now he's trying to do his actual GCSE's - he's no idea of how to manage his time so I've had to teach him using a countdown cooking timer how long to spend on each question - he'd only done HALF of most of the mock exams papers even with the 25% extra time I managed to get for him!  I've virtually been teaching him from home, going through past GCSE papers and hired a private Maths tutor - who can 'get' the way he thinks because she's autistic.

I'm trying to be positive & not bitter about the previous specialist being 'old school', but now I'm faced with a 16yr old who won't go anywhere without his mummy, has panic attacks in social situations & has temper tantrums as he can't express his emotions - it's like having a 14stone 5ft8 four year old sometimes.  I could have got a social skills co-ordinator for him if I'd known his actual issues.  He now sees a Speech Therapist but apart from that, all the new specialist said was that it was "time I cut the umbilical cord" - easier said than done!

  • Nathan's actually left school now & starts college studying Art in September.  I'd not consider home-schooling due to my work commitments, although I'm full of admiration for parents who can do this.

    He's been getting up at 2-3pm since leaving school & then staying on his xbox, not showering or getting dressed.  I asked him how he was doing as he seemed a bit lost & sad.  He actually told me he was happier at school because he had routine, structure to the day & now there's nothing worth getting up for.

    I came up with a plan & each day I prepare a schedule of chores like letting the dog out, making his bed, emptying the dishwasher etc.  Worked like a dream!

  • Consider that if you homeschool your child, you open the gap between his/her experience of the human condition and that of an NT resulting in further communication difficulties in later life

  • It is not unusual for children with aspergers to be diagnosed in their teens and sadly as you say it means our children do not get the help they need early enough.

    Have you considered home schooling your child?  There are a number of correspondence courses around, and it can be an alternative to mainstream school.

  • Hi Becky

    I can totally relate to your anger having been in a similar position with my daughter.  She finally got her diagnosis at 13 however the first consultant we saw when she was 7 (on school's insistence that I asked for the appointment) was very dismissive of all my concerns.  

    I hope your son has some success in his gcses.  Has he made plans for what he's doing next?  I doubt my daughter will pass any gcses (she's not been in full time school since November) for various reasons however I have little intention of her sitting them when she is 16.  To me, it doesn't matter if she's 16, 18 or 20 when she does them.  Dealing with her anxiety and panic attacks is my main priority.  I 'think' her biggest issues have come from several big changes in the past year so I'm keeping life simple for now.

    I don't know the way forward for support tbh but there are people like connexions and also social services may be able to help.  I used to live in Lancashire and I expect its very much like where I now live, the support will be there in the bigger towns but you need to go looking, nothing seems to come to you.  There is a link on this site to look for local groups.  Mine have been quite good at advice over the phone and may be able to point you towards any groups available.