At what age was your child diagnosed. How did you feel about the diagnosis
Posted by
Josie Barnshaw
on 2nd April 2009
at 16:20
Hi Dizzytart (what a name!)
I had a very long wait for a diagnosis but I knew what the problem was and fortunately as the problem was also recognised by the nursery he attended, when he moved to Primary without a diagnosis (the Primary was attached to the Nursery) I had no problem.
The GP I was registered with when the possibility of autism first came up refused to refer him for assessment so I eventually changed GP who immediately referred him and he remained on the waiting list for the Community Autism Team for three and a half years. In the meantime my GP did refer us to a Child Psychologist and he did receive interventions while he was on the waiting list. Fortunately like I said before his Primary school were great but their hands were tied to a certain extent without a diagnosis to allow a Record of Needs (as it was known then, now the dreaded Statement).
Tom is now about to enter third year in a mainstream High School (which again, fortunately, has an attached Support for Learning Unit with autism aware staff). Dont get me wrong there are a few senior teachers who havent got a clue what they are dealing with, but again the Learning Unit Staff's hands are tied (why, I dont know) but I have been told "we can lead them to water but we cant make them drink" - this is in reference to the info pack every teacher who has contact with Tom has been given - they have them but they cant be made to read them or indeed follow the recommended strategies.
My view is that to make Social Inclusion work in Education more training has to be given to teachers. After all the way things are going they are going to find more and more ASD pupils in their classrooms. At the moment, as far as I am led to believe, and I know it to be fact as far as my sons Primary School was concerned, there were autism courses available for teachers but they are purely on a voluntary basis and the teachers have to arrange replacement teachers for their classes or they cannot attend. This, to me, is outrageous and needs to be addressed as a matter of urgency, if it is still the case.
Just realised I have rambled right off the subject, sorry people.
When I got the official diagnosis almost four years had passed since I had come to the conclusion that Tom had Aspergers Syndrome, but I was still upset and I think that was just the relief of finally having the diagnosis. There were also services that couldnt be accessed, and like I said before, the school could now have a Spec Ed Assistant share her time between Tom and another child who required help - this couldnt happen without a diagnosis. Every intervention that Tom received required waiting times ranging from 3 months to, well this probably beats a lot of waiting lists, he is still on the waiting list for a befriender seven years later.
All Toms interventions with psychology, SALT, ed psych were discontinued just over two years ago. We have recently completed an Intensive Home Therapy course which was instituted to try to deal with some anger issues which Tom exhibits only at home but not restricted to their origin being in the home. In other words if something happens at school he keeps his aggression and outbursts locked in till he comes through the front door. Fortunately this is not happening as often as it used to and things are beginning to settle down (Hopefully I havent spoken too soon).
Now I think I have covered the original question hopefully. As you will probably have gathered by now I am a bit of a rambler - verbal diarrhoea, I call it!!
Josie
Posted by
Josie Barnshaw
on 3rd April 2009
at 18:42
Hi Again Dizzy
Since writing that post I have come across a couple of parents who have touched on social inclusion so I have opened a discussion under Education to maybe take this subject a bit further.
Josie
Posted by
tmpfe05
on 17th June 2009
at 14:24
I approached my health visitor when my son was 2, she referred him to speech therapy and to the hospital. This all began July 2005. We were fortunate to get an appointment with the hospital in the Autumn of 2009. The Dr diagnosed posible ASD with global development delay of about 6months+.
We didn't hear about the speech therapy till the following year, he had an assessement where it was agreed he needed it, then we had to wait in the queue. Over the next 3 years we had 3 diferent speech therapist and had 3 lots of 6 scessions. Oh joy.
The hospital saw him every 6 months. When he was nearly 4, and due to start school in the September this was made offical. He started at a mainstream school, (luckily with a statement and one to one in place) mainly because we were wrongly advised that none of the special needs schools in our area had a reception class.
It may have worked in his favour in away, as he managed to survive the reception year, despite not having the best P levels. In year 1 (which he is still in), he has excelled in many levels, and has moved from the bottom of the class to the upper middle. He still has off days, and some weeks it feels that that is all there is, then he kicks back into touch and settles back in again with no problems.
He has now been offered a place at a special needs school for September, and I know they are very difficult to come by, but I would much rather that he tried another year at the mainstream school, where is is settled and learning. The Dr at the hospital agrees with us.
Anybody got any advice?
Posted by
Josie Barnshaw
on 17th June 2009
at 22:18
Hi
Given what you have said I would be inclined to stay with mainstream, but the bottom line is that as his mother, you will know what is best for him. What do the staff in the mainstream school think, after all they are the ones witnessing his improvement.
My son was diagnosed with Aspergers when he was 7, he will be 14 on Saturday and just at the end of his 2nd Year in mainstream high school. I wont say it has been a road without its difficulties but he is doing well. In fact, I have just come back from the schools end of year Award Ceremony where he received an award for Diligence. Of course he has his off days, as you say, but with the correct support our children can achieve great things.
I am sure that if the situation changes with your son, you could always arrange a transfer to an SN school if required, at a later date.
Hope some of this helps.
Josie
Posted by
lockie
on 18th June 2009
at 22:04
Hello everyone. I am new to this site but so glad I have found it. My son is 4 and has been diagnosed on Tuesday with ASD.
My GP wouldn't send him for a referral even though his nursery teacher 2 years ago said there was a cognitive development problem. Speech and Language referred him finally and things have now progressed. I am feeling a bit dazed even though I knew deep down. I don't really know what to do to help him. He doesn't like school and does not really show many signs while there, but when he comes home he is angry and lashes out. Any advice would be very gratefully received. He is going into year 1 in September and cannot read or write and is very frustrated about this. He is excellent at computers and can easily type his name using one.
Very glad to know I am not on my own.
Nicki
Posted by
Elena Goodrum
on 19th June 2009
at 12:13
We're very glad to have you here, Nicki! : )
Elena Goodrum
Community Manager
talk about autism
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Posted by
Dizzytart
on 1st April 2009
at 16:44
Hi all,
Just thought it might be interesting to start a thread about this topic. My eldest son was 14 when he was finally diagnosed with HFA and Asperger's Syndrome. Personally there was a sense of relief, in that, finally someone KNEW what I had been banging on about to different doctors for years, and that I wasn't going mad, so to speak. My son also said he felt relieved to find out that he wasn't the only one, ie there are many othere indiviuals on the Spectrum.
My youngest son has just been diagnosed with Dyspraxia, he is 11. We already knew what the probable diagnosis would be and once again, a feeling of relief swept over us after years of fighting to get him diagnosed, in that diagnosis is seen by a lot of experts as the first step in getting the help our children need.
Have any of you had to wait years to get a diagnosis for your children???? Did you feel relieved???? Was there a feeling of upset, grief, etc. Feel free to post your views, and experiences.