Published on 12, July, 2020
Hi,
I am a father of 3 teenagers. My 13 year old son who after 11 years of fighting has been told he has ASD. Now we are on the looooong waiting list to see the neurological assessment team for further assessments.
i was always told I'm over-reacting when it came to wanting him to be seen by a psychologist as from just under 2 years he displayed behaviour I was not used to as a parent or as an uncle to 30+ nephews and nieces. when I raised with his health visitor that he would walk near the TV banging his ears she said "we'll get his ears checked" even though I told her he has separation issues from his blanket, he substitutes loss of blanket with silky labels in clothing or his sisters swimming costume. He would cry saying "the music makes my belly hurt" he walks on tiptoe and has since nursery. His ears were checked and deemed fine!
on another occassion I asked the school to refer him because of moments of complete emotional breakdowns, they said "he's a normal kid, they all have off days." One day I picked him up from school and they said "he broke down at dinner" I asked what was it they said "spaghetti bolognaise" I said that's strange because he loves that, then I clicked, did you mix it up I asked "yes, why" I said he thinks you're hiding something in there and won't eat it.
everywhere we go he mentions "funny smells" that make him feel sick. He gets dizzy and emotional in large crowds etc. all this I've share over the years until finally his Secondary school SENCO referred him to an educational psychologist who gave him a very high score on the ASD scale after hearing, and witnessing, for herself what he deals with every day.
so we are getting there!
Alan
I am a youthworker (hence my name)for a number of years now with my passion surrounding ASD/SEN Youth. I like to run inclusive clubs where young people of all abilities come together as this helps ASD children feel accepted, as they should be. And it helps non ASD youth understand difficulties ASD youth experience.
It does help having my son as one of the members that I can feed off from to keep it running.
Thank you both for feedback, it really helps.
My son has not yet been assigned any help, I guess this comes after neuro team say where he fits on the spectrum? His secondary school have been amazing, they are aware he does not like crowds, noise or smells and realised this is why he won't eat in the dinner hall and often means he goes without eating. The school have now given him a pass to leave 5mins earlier than rest of school to make the dinner hall whilst not busy. One LSA has even gone as far to collect a menu, ask my son what he wants at the start of the day and my son collects the food from him at lunch time.
There are things he needs a lot of help with that I'm fearful the delay in getting will have on his academic studies. My son does not register time in sense of the meeting homework deadlines, to him it can be done on the way to school (rushed) on the day it is due, or the following day depending how he feels.
He has become attached to football and ps3, his routine is around these 2 activities. When not in his room on the ps3 he is walking around the house kicking a football, tennis ball and even a bouncy ball.
If I am honest I am fearful of a lot of things especially around his security in this world. He has tendencies to speak things that can be read as rude, racist or aggressive. He's none of them but until you listen to his full, often long explanatory, sentence you think "how rude." just yesterday I had to pull him aside in Croydon because he said "wow people are so poor!" which shocked me. But he explained he saw a game that gives in game money and this card gave those funds to your character. What he said he meant was people are lazy (in the game) because you build money by doing jobs (sounds like real life right?). When I explained it sounded harsh he said "is it my fault if people don't understand" the sad thing is they don't!!!
It is tough at times especially when he's in a mood that causes him to go at loggerheads with myself, his mother or his sisters. His youngest sister always fights back which causes a lovely row almost daily, how I've not had police or social services called I have no idea :/
His biggest problem is he doesn't accept he's thinking is different, but more beautiful, than the world's thinking.
We are getting there and will continue to fight with him to get what he needs and accepts.
Hi Youthworker, welcome to the forum.
It sounds like you've had a very difficult battle trying to get your son diagnosed. I'm quite shocked as to how dismissive all medical professionals you have seen have been of your son's traits - anyone with even a basic understanding of autism should see that your son fits the bill quite well. It just proves how under-educated on the subject the medical community is, even today. However I am glad to hear your son has finally been assessed and diagnosed! What sort of support have you been offered?
What is your son's school going to do to support him? My experiences of both primary and secondary school support for ASD weren't very good unfortunately - I hope your son's experiences are better. If he is being assigned a one-to-one support worker like an LSA, make sure he trusts them and they are doing their job properly. I have been assigned some fairly useless LSAs in my time who did not understand me as an individual at all and could not make me behave. However I did have one excellent LSA who treated and respected me as an individual and only with his support did I finally start behaving a bit better and began to cope better at school. So if your son is unhappy with his LSA, please do mention it to the school and hopefully they can make adjustments so everyone is happy.
Hi Youthworker - welcome . Whilst you're waiting for further assessments \i'm sure you'll agree it's a good idea to build up your knowledge of autism + how it affects your child. Maybe you've done that already, if so, apologies. Loads of info via the posts + home pg so. Sounds like your son has a lot of sensory issues which make life difficult for him. Also do you think he needs extra support at school? If so check out the section on the home pg + apply. School can be v difficult for our children, especially when they move into larger schools + also because they're having to cope with puberty. Your persistence paid off, altho you shdn't have had to persist for such a long time. This shows your commitment + love for your son. Ask anything you want + continue to build up your knowledge. Also be a bit of a pest + phone professionals to see if you can get things speeded up. I'm not saying it'll work, but it's worth a try.