Newbie! Diagnosis question?

Thanks again for this reply.  His bed isn't in line with the stairs, he can only see a hall wall.  He's on a mid sleeper so his head is in line with the windows.  He sleeps under a bed tent, which I've suggested he takes down... but he refuses to have change, and he said he'd just see more shapes turning into bad things.  He listens to Moshi (a sleep app that has sleepy stories, music and meditation talks) he loves this and he likes choosing his playlist before bedtime, but I do have it on a volume, thinking that it would drown out any other noise, but I will try it on a very quiet

thanks again, you really have been so helpful.

I'm a twin so I always had that Jiminy Cricket character in front of me 24/7 - I could measure and compare to my brother whenever I was in doubt.

I had no problem at night - we slept with the door open so I could hear the tv and people downstairs so I wasn't really separated.   

Is his bedroom in line with the stairs or is it a twisted path to his room - like a tight passageway so potential  escape routes are limited?    Is he like an animal trapped in a cage?     Are the windows high up so - from his level - he's surrounded on all sides?   (imagine a cow on it's way from the safe field to the slaughterhouse)

Do you leave some quiet music on for him?     Something so quiet that you have to listen hard to make it out - but that's too tiring so he'll probably fall asleep.    

I was also lucky that we grew up on the edge of countryside so it was quiet - no road noise or people outside.

Dogs are very autistic - if you watch them, it's all play but with very strong pack rules.    They love to play rough to burn energy with lots of growling but there's an obvious change when one doesn't follow the rules.    That's when a fight starts,

They are great to watch.

Plastic,

Oh my word, that is so amazing that you have taken time to write all this.  It's all absolutely brilliant advice, and I can totally see how my son would totally see the world as you have described.  Your analogy for being at school is a brilliant one, and I will use this to explain to my husband and Mum.  I think it says it all, as he really does seem to be in fight or flight mode a lot of the time we are outside.  He was terrified of dogs, but at the same time, absolutely loves dogs!  I did sit him down at the beach and I told him to watch the dogs and their personalities and guess what they were thinking.  I pretend I'm the dogs by saying what I think they're thinking, and it really did help - as instead of thinking they were out to get him, he could think of them just saying ...'I love playing, I love playing, I want to find someone to play with, that boy looks nice, I'm going to go to him'.  So I'll definitely try doing what you suggested about sitting with him to watch other people play and interact, and their different 'rules' of play. I love the idea of turning it into a gentle, accepting game to 'spot the rule breakers' as a way of talking and learning more about it. 

I love the broken electrical idea too!  He loves lego, and did the Millennium Falcon when he was 4.... he's just redoing it again now.  He does always want to go on the iPad, as he wants to watch youtube and find out as many interesting facts, and watch people play video games - which I hate, but it does divert him off sometimes.  (I have two younger kids so it's sometimes so hard) 

Can I ask how you were at nighttime?  He is terrified at night, he thinks people are in his room trying to talk to him, that every shape moves into something else, and hears sounds that aren't there.  He will only sleep upright, facing the door, with his teddies positioned around him, and his blanket tucked over his shoulders.  I've tried to lie with him, but he knows that I will go at some point.  I'm not suggesting that you would know the solution (Im pretty sure there isn't one at the moment) but it would be interesting to know if this a common thing too?

It sounds as though you have really succeeded with who you are, and I love the positivity you have shown.  I really do believe that my son will have a fantastic life because of who he is, and the positives will override.

Thanks so much again, you've been such a massive help.

I'm an old aspie - I can give you an explanation of how I interpreted the world from a young age.

As you've mentioned - rules - we love rules-  black & white, no quibbling.

You need to work very hard to get him to build in 'slop' to account for other people or their blatant rule breaking will be a HUGE problem for him as he gets older - I'm betting all the chaos and rule breaking is the cause of his meltdowns..

It can be something as simple as taking him to the park and sitting down for a snack - and getting him to watch other people with you - a scientific observation - and spotting the rule breakers with him and explaining that that's just the way they do things - they might think they are right but he will see that that are wrong -  get him used to the concept of people having different views and not to get upset by it but to note it and try to figure out why they break the rules.    

If he can start to see that other parents have taught their children different rules or values, he will be better able to cope with gentle chaos.     Also, ask his opinion about things and discuss his answers in a positive way - give him confidence to be mentally strong and understanding of others.     Then try getting him to predict patterns of behaviour - like a game - make it fun.   

You are like his Jiminy Cricket explaining the details of what he's not understanding in real-time-  before he gets stressed by it.

A good place to start is watching dog interactions - sitting on a bench and seeing the 'energy' and attitude of different dogs as they arrive and watch how all the others react.

Something to think about is his fight-or-flight response - we tend to be hard-wired at 99% so our brains are in a data acquisition and escape-route calculation mode expecting a tiger to jump out and needing to run away.      

To deliberately put ourselves into a difficult situation like school takes an enormous amount of faith and stress - it's exactly the same as you being dropped into a chimpanzee enclosure - anything could happen - imagine the stress!

But we do - because we're programmed from day one to be a good boy, don't embarrass parents, do what you're told - and the thought of going back in with the Tiger every day is terrifying - so stress at 99% before we've even stepped out of the car.

He will need robust activities in the evenings to wind down - he will be on a hair trigger as he gets home - the safe space - where all the day's stress can be vented - how does he defrag or vent?   

If he's aspie, his brain is like a data sponge - the more things you can get him interested in or to experience as young as possible the better - it lets him build a data-library of experiences that he can refer to to in future encounters.

Whatever you do, don't only leave him playing video games - get him out into museums and Go-Ape, join the scouts, try gliding, go around junk yards, sailing, get him Lego and models and train-sets or playing with engines or dismantling old clocks and broken electricals to see what's inside  - and indulge as much varied learning as you can while he still listens to you!      Make everything exciting and fun!

If he can find lots of acquaintances friends and different people of different ages, he's less likely to become a teenage shut-in and he'll always be able to fit in somewhere - and he'll find his passions that will set him up for a career that he enjoys and can manage the stress..

I developed a large, extrovert personality and did model making at lunchtimes at secondary school - it attracted all the other undiagnosed aspies out of the closet to join me and we were all friends - and I'm in my 50s now and we still all get together at Christmas.

Hope this is helpful.  

Hi,

Thank you  I looking for both really, as I wanted to explain to him (when he's ready) I think he would really like having a more defined definition.  He loves information, and I think that when he's older, he will want to have a 'label' as such, something that is more relatable to him.  When I researched Asperger, it just ticked all the boxes that he has, but I don't want to start suggesting something that isn't right.  Maybe selfishly it would help me too, as it gives me a better understanding too.  (if that makes sense!).  I've known for a long time that he was autistic, but it's taken such a long time to get the diagnosis.  

He's such an intelligent boy, that can show huge amounts of empathy at times, who can talk with confidence etc etc, but then will have so many meltdowns, become intensely angry when rules are broken, change in play happens, someone changes the structure to list a few.  He is always having emotional overload, whether it's good or bad.  I think I was doubting whether he would get a diagnosis or whether they would just think he was hard work and naughty and I was just making matters worse by being too soft on him!  It was a big relief when the lady said it was very apparent that he was on the spectrum.  It means that I can also have confidence to know that I've been caring for him in the right way, and that people close to me won't now think I'm being too lenient.  A more detailed diagnosis, would help my immediate family understand more, and back me up better too. 

Sorry, I've gone off on another tangent now!

Fab, thank you - I really need to do some more reading, as I haven't got a clue about ICD-10 and DSM-5!!  I just got given a very basic leaflet!! 

Thank you for your time, I will keep looking through here too :)

My mum is 80 now though and already saying her memory isn't what it was 6 months ago. She's really deaf and phone conversations with her are really hard work. If they wait too long she may not even be here any more. Her capacity to participate may be diminished. I know it sounds selfish, but I had to get her to walk through the questionnaire now.

  My relationship with her is not straight forward, I have huge communication difficulties with her to be sure. But I am not without compassion. The poor woman had a lonely childhood and was closed off due to her own childhood tragedies, then the daughter she so wanted, rejected her hugs from birth, seemingly, and refused to play or interact with her...It's so hard to talk to her, but I hope she gets answers as to why I could never be what she wanted before she goes.

It's delicate territory, but I hope she she gets some healing too.

You're welcome, you kind of do just get that ASD/C label on you're diagnosis but your report should break down basically what the assessor observes about you and what they think.

They will talk about what they here from whoever you bring with you.

This is another small piece about what he heard from my mum.

"From a developmental standpoint, as also reported by his mother, there is evidence of significant ASD like behaviors since early age. It seems that 'O' did show problems in sharing his internal worlds with others, for example there is evidence of lack of appropriate social communication (including lack of spontaneous seeking to share enjoyment, interests or achievements with other people and lack of showing, bringing or pointing out objects of interest when he was a child); Moreover, his mother does remember evidence of 'O' having problems in developing appropriate interactions with other children."

Yep that's what was spoken about too during my assessment he was asking my mum all these questions about my childhood that were basically just simple yes or no answers but they were more specific than what you get on the AQ questions and about 80% of them she was just saying yes, yes, yes and he didn't even get the end of the assessment and just said that he can clearly see that I'm autistic and he has no idea how no one picked up on it. I believe he said "this is a classic text book Aspergers" but he can't give me that officially that's why my report says ASD/C.

If you're getting diagnosed as an adult you really need someone to be there that can talk about you from their perspective especially about your childhood because they need know what you were like before you started masking which in my case started early and I got good at it.

Something similar for me. Being a medical phobe with an A&E nurse husband in a pandemic is a recipe for a MH crisis. With the services refusing to do anything to help and major melt downs happening everytime I went to the shop or the doctors, I was forced to investigate what they were for myself. Clearly, they weren't panic attacks, no personality disorder or anything else either seemed to fit me or explain it...then I came across the descriptor of melt downs on this site. That what it felt like, my husband agreed that's what it looked like. I then scratched my head a bit, 'cos I'm hardly autistic, right? And then, I read the childhood markers...and oh God! Then, I spoke to my mother, oh my God!!!

Yes !!!  I cant stop thinking about it and ...my diet has totally failed as I'm a great stress and comfort eater !

Oh thats great - thanks for sharing, I just thought I would get a one word label ie "Aspergers" !  Thank you!!!

Covid has made the mental health diagnosis "industry" extremely busy people spent a lot of time introspecting and realising that there's about themselves that should be addressed. That's exactly what happened to me and I'm glad that I did and if there's one positive thing I have to take away from the lockdown situation is that without it I wouldn't have found out I'm autistic and I would most likely be counting to suffer without knowing what's going on with me.

Haven't had it yet.  The NHS will take 18 months to two years.  I'm going privately through the Lorna Wing Centre instead.  They've had all the developmental forms from me and my mother, but they've got a back log due to COVID.

Hi Happy

May I ask what you're actually looking for - a technical explanation of a diagnosis or a practical explanation about what's likely to be going on inside him and why he does things?

If it's the latter, let us know what behaviours you're interested in and we can try to give you pointers to make his life easier and less stressful.

Yeah I was lucky I didn't have to wait as long as they said it would, did you get a private assessment or NHS the private are faster usually at least.

Brill!  Thanks.  That's helpful.  It's just killing me going through the wait, but I guess we've all been there or are going there.

There's about 6 pages worth of of my report so there is usually a lot to go through some people can have a lot more pages than that

Yeah it's very comprehensive and detailed, the simplest way to think about it is a complete dissection of your life from when you're born to the present moment and the reason for the dissection is to look for autism. It's really eye opening and there's a lot to take in and digest but for me at least it was very much worth it because I always knew I was different from most people around me and I didn't know why and I always thought that there was something wrong with me