just new need advice

thanks to all who wrote back to me it made me feel so welcome and not alone .

i felt when you get a no  for a diagnose you are left to cope they move on and your left .

great advice about the diary thx he does cope better in school as it is routine this school is great and support him really well. in primary he was so low he went after assessments into a room to speak private to one  of the ladies as he was so frustrated and very low .he doesnt realise when he is frustrated then it explodes so getting that out helped .

Hi Oldmum - I think anyone reading your post would feel moved by your obvious love and commitment to your son.....it shines through.   You shouldn't have to worry but you do.  There really wasn't anything for them back then, was there?  It must have been very hard on you all.  I don't think there's anything I can tell you but I feel strongly that things should be better for all of you than they presently are so I'm going to comment.  Also because others will be reading.

 My son was diagnosed in the 80s before he was 3.  He was given a place in a nursery + then a place in an autism specific school.  The assessment took a number of months.  I complained about that, but when I read some of the posts on here I think our experience was quite smooth compared to what others have to go through.  

  Your post is also a salutory lesson for all those thinking about the future.  Whist no care provider is perfect, as you well know, it's a fact that some are better, sometimes much better, than others. Same for social workers.  My son has a good autism-specific care provider. He has a helpful social worker.  All the budget cuts affect everything + will so year on year so we have to be vigilant to protect what we've got.   My son has a better quality of life now than he had with his previous care provider.  He is also in an environment more suited to his needs.   I don't know what your social worker is like but if you haven't already you should raise your concerns about your son's care.  If need be ask for a change of care provider and ask to be involved in the shortlisting and selection process for that care provider.  It beggars belief that they haven't got anyone to play a game of cards with him.  Does he use a computer?  There are card games on them.  You could also ask for a review of his medication.  As you will also know, medication is no substitute for good quality person-centred support.  It used to be called "the chemical cosh" in elderly persons's homes where staffing + training was inadequate. 

 I really hope things improve for you all. You're absolutely right when you say you  should now be able to hand over his social as well as his basic care.  

My son was born in 61 and teh few references to autism were 'hidden intelligence' and  parents not bonding. We were devoted parents but took a lot of looking after and Drs not interested he was healthy and looked fine. We were on our own both medically and finacnially no child beneifot for first borns. Sent him to local school who couldn't cope nor could ESN (educationally subnormal) ended up in SSN (Severly subnormal) school and lived at home till he was 24. Autism never mentioned. "Mentally handicapped" was the term. He tehn went to love in a residential home about 20 minutes from where we live, not entirely happy there but also gettign day care at a centre and we picked him up every weekend and high dasy adn holidays. By now was calling him autistic he had the traditional behaviour patterns and special charactistics, very numerate, indeed obseesed, think rainman. At weekends play a lot of cards, particulary with his father, when he is at his best socially and conversationally, he is very competant. Despite haveing  little road sense, well in paractice, where it counts, his behaviour generally  seems to lag behind his comprehension.  

I have often suggested cards at his residentail home but  always told not enough staff.

In October went over to Assisted Living and was led to beleive it would all change for the better. It doesnt seem to have made much difference, things he was 'supported' with gettignto day centre, sahved, laudry etc now come under ali otted 'hours' but no visits to pub and in about 27 years he ahsnt had a game of cards yet. INdeed he has said he doesnt want to play with them, despite coercing strangers into a game when we are out 

I have tried to get help from the staff, new and old, but tehy seem to gang up and am made to feel I'm interferign and askign for the moon. We aslo take him out for wlaks as he dosn't seem yo leave the house unless its for his day centre. He is on alot of medication none of which he took whene living at home and I feel it is slowing him down and he is overweight.  

We are in our early seventies and he is 51 I feel we should be able to hand over his social as well as his basic care.

hi - welcome to the site. Some parents keep a diary to show to the professionals, listing what happens at home but not/or less in school.  How does he feel about going through the assessment process?  Is he getting support for the conditions diagnosed previously but not for undiagnosed autism?  I'm asking because good support + his tablets may be helping him to cope better in school than he otherwise would.  This support etc may be helping with the undiagnosed autism.  Is it possible for the school to clarify to the professionals the nature of his support?

yes  , but waiting for re referrel he was found to have strong traits but not enough for diagnose  , deep down i feel he does,  he did a group setting in clinic and did ok but they didnt see him when he came out . everyday we try to help him cope with change ,and his "meltdowns" as i call them .he seems to score ok but when u scratch underneath the surface u see the problems he has ..

Am I correct in understanding that your son has been diagnosed with ADHD and dyslexia, but denied an autism diagnosis?