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Youthworker

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

Parents

  • Hi,

    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.

Reply

  • Hi,

    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.

Children
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