The "A" Word

There are several specialist employment agencies for people with ASD but fewer actual employers! Of course most people on the spectrum are not diagnosed and are working in all sorts of jobs and professions. It tends to be the less cognitively able people with ASD who struggle to find meaningful occupation after school. I'm cynical of course but its borne of years of experience -but school transition services seem to think that pushing people on to FE colleges is all that's needed. These can just be dumping grounds who take the money then push them out the other end to virtually nothing. Families then have to somehow identity and arrange funding for what comes next -whatever that is! I know I'm an old fogey but the self directed support agenda has left families really struggling on several fronts. Its a sair fecht as we say up here!

I have no personal experience of autism but I do know of a family where the parents and grandparents are having great problems excepting it, so from that point of view the programme does seem realistic.

www.autism.org.uk/services/work/work-search.aspx

And services and schools don't seem to realise that!

There are bound to be a lot more adults than children on the spectrum. Children grow up and turn into adults.

jane10 your post says what I was trying to explain but you said it more eloquently

The GP in The A Word was a bit hopeless, wasn't he, Greenfinch?

Being labelled is a good thing. It got a lot of pull-ups for him until he was able to control himself at school.
We are reading a Robert Winston book called What Goes on in my Head at the moment. Lots of stuff in there about what happens automatically that didn't with him. He has to learn a lot more than the neurotypical child, e.g., his sister.
What is good is that he can see it, and talk about it, about how he is different and what to do about it.

My grandson had an early diagnosis because a doctor at A and E picked it up.My daughter was asked where GS said he hurt and she said that he didn't actually say very much. Within 3 months he was seen by a paediatrician and labelled!

One of the reasons my grandson was diagnosed early was because there are so many teachers in the family and we all recognised the signs, so suggested having him tested, particularly for language development.
We also knew that if he wasn't statemented before he started proper school, he would not get the help straight away.

Unfortunately most families do not have that help.

Often parents do know something is not right about their precious child but, understandably, find it very hard to face. Some of the hardest situations I have had to work with and support were parents who did not want a diagnosis even though school, friends and often other family members were very aware of the child's specific needs. We had one child who was with us all through nursery, reception and KS1 but parents would not allow us to have him assessed. It was devastating for them to think that ther child was 'different' to the one they had planned and dreamed about having. Meanwhile we supported as best we could but had no additional funds to provide specialist therapy or to provide an extra pair of hands in his class to support the teacher to meet his needs.

My nephew, aged 25, was recently diagnosed as having Asperger's Syndrome. We all knew he was slow to reach major milestones, found learning quite tricky and was rather 'quirky' but put all this down to his very early birth (26 weeks). It is only as he got older that his inability to fully empathise, and to be brutally blunt on occassions, caught the attention of people at the job center! He was referred to a specialist at the local teaching hospital and diagnosed.

ninathenana No I don't think the teacher was aware of all the problems, he's one of many they've had filling in this year which has been far from ideal. It's really only in the last couple of years that there has been a real problem. Previously he seemed pretty normal, although now we can compare him with his younger brother we can see he's always been a bit different. When he was little his dislike of certain foods (well most food actually) and certain clothes didn't seem symptomatic of anything. Lately noise has become a real issue. He is still waiting for an official diagnosis but the school is taking it as read.

Its not a matter of getting help. Its understanding themselves and looking at life from a different perspective. It can be very useful for partners and people's children to understand why the individual is the way s/he is. They can give themselves permission to eg not go to parties or staff nights out. They can identify sensory strategies that help them etc etc. Sometimes just self understanding can make a lifetime's problems click into place and make sense. There are 5 times as many adults as children on the spectrum and most are not diagnosed as they don't need to be.

He also knows that many well known people both now and in the past were the same and achieved many things.

Greenfinch although my son is 25 not 38 or older. He , his dad and I feel it was the right thing to do. He now spends much more time in our company rather than shutting himself away in his room (communication is still on a speak when spoken too basis) He will be attending the local ASD community get togethers and his ASD case worker is helping with his PIP appeal. None of this would have happened without referral. Yes it's too late for his education but that's not all that's involved.

We talked to our DGS ( with his Mother there) about him having autism when he was almost 8, the fact that his brain is wired up differently, but also that so many other children and adults had the same ( he was comforted by those two facts.)
Children need to know why they are different, but you have to judge the moment to tell them.

What is the point of such a late referral ?What help can be given at that age ?

You are right durhamjen.It is easy to forget that many people would not recognise autism.

I was interested in young Alexwho promotes the "advertisement" and does it very well. At 10 he knows he has autism and I was wondering what is the best age to tell a child.We have explained his problem to my grandson but have not used the word autism. However he still thinks he is stupid because he has a one to one helper.

I think I've said before that the average age of referral to our diagnostic service was 38. Oldest referral was 84. So actually 4.5 is a BIG improvement!

My grandson was picked up early as well, Greenfinch. The research was mentioned on the radio this morning. It was Newcastle University, looking at the past ten years.
I think Joe's parents did not look for help earlier because nobody in the family seemed remotely aware of the possibility. It 's still like that in many cases.
The sister in law arriving on the scene like that was very fortuitous, but I suppose there had to be someone to help, otherwise he would just have been left sitting on the sidelines at school.
Having gone back to school, hopefully, he will be statemented and get one-to-one help. What's the betting it will be with the girl who lost her job in the factory, who was possibly a primary school teacher in her home country.
It may seem like utter claptrap to some of us who know someone with autism, but it's the others who need to think about how the child who is different is treated. I do not think it is aimed at those who know someone with autism.
We all feel sorry for him being missed out of the party, but it happens quite often, as does standing with your back to the wall looking the other way to cut out sound and movement, swinging looking up at the sky all the time, and lots of other small things that single Joe out from the others in his class.

This is from the autism.org.uk website.

www.autism.org.uk/get-involved/tmi.aspx

A video called too much information.

I will not watch any more of this. I saw the first episode and was very disappointed. My DD has watched both episodes and says it is utter clap trap. She has three boys with ASD's so knows all about it!

I am amazed by the fact that the average age for diagnosis is 4.5 years which is far too late in my opinion. My grandson was seen by the specialist when he was 2.5 and those 2 years before going to school were vital in his development.It gave us time to employ a good speech therapist and social services were marvellous in visiting him at home and helping him with social skills etc. They also were a good support to the family. Going by our experience it was fairly obvious by 2.5 years that there was some sort of problem. In our case it was delayed speech and lack of imaginative play as well as earlier signs like not unclenching his fist at 3+ months, the lack of pointing and waving, and walking on tip toes which he still does given half a chance. Obviously in themselves these are not evidence of autism but they are indicators of a problem if all occur together.

Because of good early intervention my DGS was able to attend main stream school with his twin. He has reached all his targets for his year and is in the middle group for comprehension .This has not been attained without hard work : he has to do all his homework even though he doesn't want to and he is disciplined in the same way as any child of his age.

Of course there are still many problems .Social skills are still lacking somewhat and he finds it very difficult to share and empathise with others.
The remains of his echolalia are still there and he often sounds like a mini adult with phrases he has picked up.

I can't believe that Joe's parents did not seek help earlier. Perhaps it was because they were both ashamed of him as suggested. I feel very sorry for him as they allow him to listen to music all day long without trying to involve him in their world.

I think autism awareness should be taught to all teachers and trainee teachers.
The latest research shows that the average age at which autism is picked up is 4.5 years, so many children will be around Joe's age when it is diagnosed. This hasn't changed for the past ten years.

www.autism.org.uk/get-involved/world-autism-awareness-week.aspx

Starts tomorrow.

Deedaa I find that teacher's comment out of order. I'm assuming he is aware of your GS diagnosis ? If so, he shows a total lack of understanding of ASD and needs some extra training.

I think it's sad that GS1, who used to love school when he started, now mostly dreads going there. The constantly changing teachers haven't helped this year. The latest one thinks he's "a bit of a Diva" and needs to think about his future (He's 9 for heavens sake!)

DD took him on a trip the the Harry Potter studios with the Autistic group he belong to . It was great because they all had "issues" and nobody minded!

This boy is fixated on his music , and has perfect recall of all their lyrics.
He also seems to have a good sense of pitch and rhythm. Why has no one has tried music therapy for him?
He might
respond joyfully to being given the opportunity to make music for himself. Most computers have music making programs.
But possibly that's why the, " hard man" grandpa is having those rather uncharacteristic music lessons. Will grandpa save the day, by taking the lad to his own music teacher? The pub is out, and he needs to keep his grandson amused somehow.
A few sufferers from Autism have amazing ' special ' talents in art, maths, and music for example. They used to be known as, "Idiot
Savants" but I assume there is now a more pc term for such geniuses.

I keep thinking about the school that failed its Ofsted because the inspectors arrived early and the cleaner let them in without asking for ID (no staff there). The inspectors gave it an immediate fail and left. Heaven knows what they would make of this school!!! I hope things have improved nina with the 0-25 strategy looking for early signs, but I suppose you are right.