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

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

There's a lot here that other parents can come in on, so hopefully this generates some beneficial discussion and feedback.

The wall climbing fits in with what I've observed with people who use cycling or skating stunts. Despite the risk the doing does seem to involve focus and escape. Beware he isn't being encouraged to do anything dangerous by these "mates".

Hi Longman

Thank you so much for your reply!

Dan has a history from being very young of "kicking off" on his way home from school or after getting home.  At around 8 this was mostly running away from me or my husband on his way home from school, refusing to come back, then on getting home nearly an hour later than we should have, he would rock on his side in foetal position on his bed and would growl and bite if anyone tried to comfort him.  We soon learned he had to have that time, and it's the same with any meltdown.  There's nothing, no physical or vocal comforting that's going to work until he's had time and space.  

I really like your ideas about a chillout zone.  He has only recently taken the huge step of going back into a bedroom (his own this time) as he has slept downstairs for 2 years after not being able to share space at all.  We're not in a house where the kids can each have their own rooms without us parents sleeping downstairs and Dan would insist on sleeping downstairs despite having his own section of a room that he shared with his brother (although his brother was very understanding and careful, it just wasn't enough and when Dan tried to share it turned into panic attacks and tachycardic episodes that hospitalised him.  We moved downstairs and he has now got his own room.  He has decorated it a soft neutral stone grey himself.  For relaxation his first "go to" is the Xbox, which isn't really great for him as he likes COD and other loud games - strange for someone so sensitive to noise!  He also plays music on his phone and turns the lights off with a lamp on.  He's expressed a wish for some mood lighting and help organising.  He is very untidy for someone who gets so upset when he thinks someone's moved something!  Wherever he goes in the house he leaves a trail of food wrappers, mugs, plates, clothes.  I know most parents of teens will say the same but the other two do pick up after themselves most of the time.  You can ask Dan to do it and he will forget (perhaps conveniently, I don't know - he tends to say yes then say he didn't hear you or forgot).  So getting some easy ways for him to at least contribute a little would be helpful.  I am physically disabled (minor but sometimes worse) and my husband is blind, so picking up things off the floor is really important.  I've gone off the subject of sensory issues there though haven't I?

Dan used to have collections of things for comfort.  He had Lego men that he had to have in a certain way on his windowsill when he was younger.  He once burst his brother's eardrum with a Lego umbrella stick/flag pole for moving one!  He also slept with bottle tops in his pillowcase.  As a baby he would over focus on what he could see, to the point of twisting his head round to continue looking at a basic (no singing, no dancing) mobile in his room.  

Nowadays things are different and he has less of the collecting behaviour and more of the obsessive.  An example is his hair washing which he can't go without for a day despite not being very "teenage" in smell and grease levels.  Often he washes it more than once a day - his hair in general has been an issue in other ways, he can't stand having it touched, stroked or cut and fiddles with it a lot (although there is some hand movement around his face and hair that I am concerned is actually a tic).  

He used to wash his armpits three or four times a day, and sprayed Lynx on himself til we could barely breathe, pretty normal for a teen lad I suppose (they always either stink because they care too much or stink because they don't care enough lol).  However, it was in stark contrast to his big brother who if he has a bath you know it must be Christmas!   Now he doesn't notice when he reeks of BO, and I don't mean the general level where it might get overlooked (oversmelled? LOL), but hefty post sports at college stench, even when he sniffs his pits.  I think that I notice him not being able to smell some things while being overly sensitive to others (the smell of oily fish being the worst as it makes him retch).  I do wonder if this is related to the hair washing (he often mentions the yummy new shampoo I've bought and Lynx smells) and wonder what level is "normal" and what is perhaps indicative of smell sensitivity or comfort from certain smells.  It's really hard to separate out possible obsessive behaviours from sensory seeking behaviour.

Another example is his impulsive/compulsive climbing.  He gets what he calls an "instant urge" to climb buildings when he's out with his "friends" (most often a couple of lads from college who are not really friends and somewhat manipulate him and even belittle him).  He says he doesn't know why he does it, he just knows he does it there and then.  He explains being up a-height as being "peaceful" and "open".  I find it hard to determine how much of this is escapism from the social situation (these lads are bigger, tougher, rougher, street savvy, history of behaviour problems, and Dan thinks therefore they are Gods), how much is thrill seeking from the climb itself and how much is the opposite to thrill seeking because of his description.  I do think it might be the ultimate escape, an extension to how he used to run off.  

On a total side note, although I've had the lovely distraction from these feelings that a relaxing Christmas with the kids brought, I find myself looking back at the many people who called Dan an attention seeker, a faker, a manipulative spoiled brat with a gullible doormat mother, all these disbelievers in the school system and the family (including a biological father that luckily Dan and the other kids have no memory of) that ditched him etc with quite a lot of anger.  Is that normal at this stage or am I being totally meanspirited? 

There are other postings, including a sticky topic near the top of one of the discussion themes, that address different behaviour between school and home. Because of peer pressure a school your son may well "let off steam" at home where it feels safer.

Being able to get absorbed in something which is comfortable and "focussed" is most likely to help, but it is a very individual thing. Some people relax on computer games even to the point where they seem to do nothing else - but escape to other worlds that can be "controlled" better are a help.

If finding an activity is proving difficult, just good ambience may help. Some people find lava lamps comfortable, or a low lit room with certain subdued colours, or certain music. Also consider things like pressure eg weighted blankets.

For some it is objects which have stimulating visual detail, or evoke certain sensations. This may mean collecting things that seem like junk, also arranging them in patterns which again exert environmental control.

I'm pretty certain some skaters, cyclists etc are AS driven - just doing endless manouvres seems to help some people.  There are postings on here about the benefits of pets (assuming he'll clean up after one and feed it).

I wish there was more stuff on sensory issues. There are books and websites on the different types of sensory behaviours. But no-one seems to address sensory stress or overload much. This is because an overemphasis on the Triad of Impairments as an explanation of autism rather than its primary purpose - diagnosis, means it does not cover aspects which are not as autism distinctive.