Mum of newly diagnosed ASD teen with sensory issues - where to find advice?

Hi everyone

After 8 years of CAMHS being in and out of my son's life, he finally has a diagnosis of ASD.  On top of that he probably has Sensory Processing Disorder, but they do not assess for it in our area.  His main area of sensory problem is noise - he is incredibly noise sensitive.  

CAMHS say they only take a person to diagnosis and after that we're to find our own way really.  We are waiting for his formal diagnosis to be put in writing.  The only people who will remain involved will be OT *if* they believe he needs extra work on anger management and recognising emotions, which is likely.  Other than that we're on our own.

All this time I've focused on how a diagnosis would help or effect him as a child, and him becoming a young man (16) has crept up on us.  All of the strategies and help I know of is aimed at younger children.  

My first focus is to try and make his room "autism/sensory friendly" so he has a relaxing space to unwind after college (which is incredibly stressful for him currently and means he's often having meltdowns afterwards or when he's anxious about going).  

I can't find any "sensory diet" advice for a person of Dan's age, but that seems to be common across the board with other issues I have looked into too.  Can anyone point me in the right direction for learning more about how autism and sensory issues effect older teens and adults?  Does anyone have any ideas for a relaxing space for him?

Thanks in advance

Kathy

xxx

Parents
  • Oh I am and I am keeping a close eye on things, but all the while knowing there's not much I can do about it really other than talk to him without judgement/telling off.  Dan sees no wrong in the "friends" he picks (and they only have to say hello or smile to automatically fit into that category) and in the past has defended them vehemently even when they are being manipulative, harmful or just idiots.  Eventually there comes a point where it clicks that he's being used or manipulated and this brings on low moods, meltdowns, etc.  Thankfully this doesn't happen often any more. 

    He has been badly assaulted twice in the past, one of those times due to trusting someone as a friend the first time he met them, and them taking advantage.  This second assault (which was more sadistic in nature) led to what the hospital described as a mini breakdown, and he had to be hospitalised overnight.  

    He does have one or two safe friends, including his girlfriend who really does "get" him and looks out for him.  I know if he's out with her, it's like if he's out with me.  He is however always taking the first word in a dispute between others as gospel and getting himself involved in their typical teenage bickering when it has no bearing on him!  

    Probably as a result of the two assaults on him, he is overly focused (bordering on obsessed) with expressing that he could "have" x, y and z if he wanted and often describes other kids in a comparative way, could he have them (he never says they're bigger or tougher, he's always the potential "winner" in these stakes even when it's entirely untrue).  He bigs himself up in that way, saying he wouldn't have "lost the fights" (how he describes the assaults even though they were anything but) if it happened now/he'd got the first hit in/etc.  His care coordinator thinks he has post traumatic stress on top of everything and is going to work on that with him.  

    This bunch from college are a new lot, only a couple but they each have backgrounds like Dan's but not necessarily a diagnosis (so exclusions, behaviour issues, etc).  They seem mostly harmless safety wise but are pains still as they do lead him off at lunch and tell him they won't be late back - that said he wouldn't say to them he has to get back and leave them, he just goes along.  The plan is to try and get him involved in more out of school stuff that doesn't include them so he can build some more healthy friendships.  He only associates with these lads in college time, but so far he's gone along with them truanting when they've said they're going off campus for lunch and they'll be back in time for class and then don't come back.  College understandably say they're not responsible for babysitting him but he has only got his diagnosis after breaking up for the holidays, so we'll see what's on offer when he goes back.  He doesn't accept college support when his friends will know he's getting it, which is frustrating.  They've offered him use of the autism sensory room, but it's at the other end of the college to his course and would mean leaving these lads to go to it alone, something he just won't do.  It's so frustrating. 

    My husband plays for a blind football team and the people that run that also have an autism team, so Dan has asked us to try and get him in with them.  He wants to be a sports coach in future, he has coached primary school kids football before and excelled at it.  

    I do hope others chip in with their experiences of sensory issues, particularly in older children and teens/adults as so much is geared towards primary aged kids.  CAMHS said they would recommend some books to us but we haven't got the report yet so we'll see.  

    Thank you so much for being there xxx

Reply
  • Oh I am and I am keeping a close eye on things, but all the while knowing there's not much I can do about it really other than talk to him without judgement/telling off.  Dan sees no wrong in the "friends" he picks (and they only have to say hello or smile to automatically fit into that category) and in the past has defended them vehemently even when they are being manipulative, harmful or just idiots.  Eventually there comes a point where it clicks that he's being used or manipulated and this brings on low moods, meltdowns, etc.  Thankfully this doesn't happen often any more. 

    He has been badly assaulted twice in the past, one of those times due to trusting someone as a friend the first time he met them, and them taking advantage.  This second assault (which was more sadistic in nature) led to what the hospital described as a mini breakdown, and he had to be hospitalised overnight.  

    He does have one or two safe friends, including his girlfriend who really does "get" him and looks out for him.  I know if he's out with her, it's like if he's out with me.  He is however always taking the first word in a dispute between others as gospel and getting himself involved in their typical teenage bickering when it has no bearing on him!  

    Probably as a result of the two assaults on him, he is overly focused (bordering on obsessed) with expressing that he could "have" x, y and z if he wanted and often describes other kids in a comparative way, could he have them (he never says they're bigger or tougher, he's always the potential "winner" in these stakes even when it's entirely untrue).  He bigs himself up in that way, saying he wouldn't have "lost the fights" (how he describes the assaults even though they were anything but) if it happened now/he'd got the first hit in/etc.  His care coordinator thinks he has post traumatic stress on top of everything and is going to work on that with him.  

    This bunch from college are a new lot, only a couple but they each have backgrounds like Dan's but not necessarily a diagnosis (so exclusions, behaviour issues, etc).  They seem mostly harmless safety wise but are pains still as they do lead him off at lunch and tell him they won't be late back - that said he wouldn't say to them he has to get back and leave them, he just goes along.  The plan is to try and get him involved in more out of school stuff that doesn't include them so he can build some more healthy friendships.  He only associates with these lads in college time, but so far he's gone along with them truanting when they've said they're going off campus for lunch and they'll be back in time for class and then don't come back.  College understandably say they're not responsible for babysitting him but he has only got his diagnosis after breaking up for the holidays, so we'll see what's on offer when he goes back.  He doesn't accept college support when his friends will know he's getting it, which is frustrating.  They've offered him use of the autism sensory room, but it's at the other end of the college to his course and would mean leaving these lads to go to it alone, something he just won't do.  It's so frustrating. 

    My husband plays for a blind football team and the people that run that also have an autism team, so Dan has asked us to try and get him in with them.  He wants to be a sports coach in future, he has coached primary school kids football before and excelled at it.  

    I do hope others chip in with their experiences of sensory issues, particularly in older children and teens/adults as so much is geared towards primary aged kids.  CAMHS said they would recommend some books to us but we haven't got the report yet so we'll see.  

    Thank you so much for being there xxx

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