Hello new here....and a little bit of advice needed please

Hello,

I am new here - my 5 year old son was officially diagnosed with asd and adhd a few weeks back.  I have always known he is 'wired' differently so even though it was a shock to be confirmed it was not a complete surprise.  His paediatrician said mainly high functioning aspergers. Now I am lost, we have an answer but I am totally confused and feel like I don't know if I am coming or going. I have so many questions and I don't know who to ask.....so I am hoping you guys might be able to help with your own experiences.

My son is nearly 6 and pretty awesome if I do say so myself :-) he is quirky, has these amazing obsessions that he masters, he is super clever, funny and sweet.  On the other hand he is physical, picks on his sister relentlessly, rude, acts spoilt, doesn't listen etc.

I am not sure how much of his behaviour issues are down to the aspergers/asd and adhd or just bad behaviour.  Some days I think oh he is fine what were we worried about and other days it's a non stop down hill spiral. I have always assumed (should never assume I know) that aspergers is a communication issue and not behavioural, am I wrong?  He does tick all the boxes for aspergers (words of his paed), obsessions, factual, won't always look you in the eye, socially awkward as in if he knows you then fine but otherwise he acts strange, he is physical when things don't go his way, he isn't great at going to sleep, needs things to go his way.  And to be honest it changes from time to time, used to be very ritual lead and no so much now.

I think I guess I am just so confused and I don't want this to affect him in any way and I wan't to discipline him in the right way and stop losing my way.

Thanks in advance Pia

  • Hi, I know exactly what you mean about the difficulty of separating out which behaviour is ASD and which is regulation child/teen!  I haven't been on these forums myself for a long time, but I came on this evening and saw your post and wanted to answer as I have been just where you are and you're right, it is confusing. 

    With my son, there were some things which looked on the surface like 'bad behaviour' but which I was always certain were not, but wasn't sure why, until he was old enough to explain.  For example, going into shops was a problem as he couldn't stop touching things.  Eventually he was able to tell me that he could only fully 'see' things by feeling them!  (We evolved a system based on short exposure, hands in pockets and understanding.)  With instructions, it was very hard for him to take in a list of instructions, or to process verbal communication, so when you say your son doesn't listen, that may be part of the issue?  Also, because of the sensory issues, it was hard in a crowded situation for my son to tune out noise/sights, so your son may also need silence and calm in order to hear you properly. 

    In terms of general bad behaviour, at that age, they can't explain how stressful a situation is for them, and so my son would just have meltdowns from sheer stress.  As he has got older, obviously this has all changed as he was able to explain to me and I could help him more. 

    I don't know if you have read the standard Tony Attwood book but I cannot recommend it enough.  I returned to it constantly and found everything in there that I needed at every age.

    Good luck.  All I can say is that it will get easier and you will become an expert.  One thing - I thought that others were experts and discovered that when it came to my child, I was the best and most all-round expert, so trust your instincts!

  • Hi Pia,

    So the first sentence that jumps out at me is this: "I have always assumed (should never assume I know) that aspergers is a communication issue and not behavioural"

    So, I'm not sure it's possible to separate behaviour and communication- the way people communicate is always going to greatly impact their behaviour and some behaviour is communication in itself (e.g. lashing out can mean "Please stop doing that", or "I'm really frustrated"). It's not the method we want to be on the receiving end of, but if he's overwhelmed it might be the only method he has.

    I think the key is looking into the reason behind the behaviour, in order to assess whether it is "bad behaviour" or it's related to his autism. He's probably not old enough or adept enough at communication to analyse that himself, so it's mostly up to you to assess- which will be difficult coming from a non-autistic perspective (there are lots of books that explain it well- Attwood is really good! http://www.autismforthvalley.co.uk/files/5314/4595/7798/Attwood-Tony-The-Complete-Guide-to-Aspergers-Syndrome.pdf ), but do seek your son's input! 

    It's also worth noting that...

    * AS isn't just about communication, it also comes with differences in sensory processing, so things that can pass unnoticed by other people (bright lights, noises, textures of clothing) might be overwhelmingly uncomfortable for us. The thing he's getting upset about to the point of physical behaviour might just be the final thing that makes coping with all the other stuff- stuff you as a neurotypical might not even notice- impossible. So when he's lashing out it's not so much an overreaction as a release of pent up distress from a whole day's worth of minor-to-moderate discomforts. It's also very hard to filter out extraneous input.

    Time to go off on a long metaphor that I hope will help explain the 'filtering' thing: I like to think of the brain as a marble run- all the input is the marbles, and processing that input is like the marble going down the track. Most people automatically pick out the marbles they want to 'process' from the bag of marbles they are given (the marbles represent: all the different sensory inputs around you, thoughts you might be having and things you have to do)- they take the appropriate marbles from the bag and put them in one at a time so they go steadily through the track without issue.

    Aspie brains often seem to just dump everything in as it comes, and if there are a lot of things going on- i.e. marbles going in- at once (multiple conversations, loud noises, strong smells, trying to make eye contact, trying to concentrate on what someone is saying to you, also you're hungry, also the label in your t-shirt is itchy...) there's inevitably a clog as several things try to go down the track together, the brain just stops processing the new things that come in and all the marbles just come spilling out of the top- that's the 'meltdown' scenario, with lots of distress and possibly lashing out, and nothing can get through and stop it until it has run its course, because nothing is getting through that clogged up marble run.

    End long metaphor.

    * It's possible that the insistence on things going 'his way' may at least partially be an attempt to impose order and structure on his day-to-day life. Something that was once done by being "very ritual lead", as you put it. That's classic aspie behaviour- we find things a lot easier if there is a rigid structure and can be very upset by deviations from it, even if the deviation is to do something we would otherwise be really interested in! If you spring it in without a good amount of notice we can have a really adverse reaction, especially if we're already under stress (see above).

    * Being perceived as 'rude' is very common for autistic people. Often it's because we have unusual body language (e.g. lack of eye contact, as most of us find it very uncomfortable), a tendency to bluntness/lack of insight into how our words might affect other people (especially when young- we tend to learn social manners the hard way rather than doing it on instinct and it can take a while), and inability to tell, for example, when other people are not interested in continuing a conversation.

    *As a rule, autistic people and confrontation don't mix well (I even get distressed when people are confronting completely unrelated people in close physical proximity to me), so I would suggest relying much more heavily on the proverbial carrot than the proverbial stick when it comes to matters of behaviour and discipline. Slight smile

    Hope this helps

    Emma 

  • Thank you for your reply. I will look into that book. I get so confused as one minute I think he's fine and then not, tough times x

  • Thanks Emma this really helps. I never looked at the communication and behaviour together, I don't know why as after your explanations it makes so much sense. I think my problem is that I do believe he has aspergers but on good days I think hang on he's OK, can we have good and bad days like its not even there one day? He can communicate absolutely fine some days and other days not but then as you say that could be surroundings etc, maybe just cos I'm not aware things are an issue sensory wise for him doesn't mean they aren't. I know I'm rambling on what I guess I am trying to say is if he has minor aspergers if such thing then can I look at it as someone wld to someone with quite severe aspergers or asd? Does that make sense. I'm over analysing aren't I? 

    Thank you 

  • Severe vs Mild is another difficult one, I'm afraid!

    Autism is often described as a spectrum condition, but this can give a misleading impression. It's not really a scale like this:



    Really autistic                    A bit autistic                   Very slightly autistic              Not autistic
                  |_____________________|______________________|__________________|


    One autistic person can be completely non-verbal but have very little difficulty with sensory input or intellectual processing. Another might find bright lights and loud noises completely intolerable and break down in tears if they can't find shade or silence, but be otherwise able to present themselves like a non-autistic person in social situations (with a little effort/practice). 

    It's a multitude of those simple scales all going on at once, and it can even change day-to-day depending on what they are experiencing or how they are feeling. There's not even really any clinical distinction between aspergers and autism (I was diagnosed aspergers like your son, but I will refer to myself as autistic as well as 'aspie', depending on the conversation). It's all autism at the end of the day.

    There are strategies you can use that are generally helpful across the board, though. The book I linked to (which is the same one Inkpen was referring to) is quite helpful at identifying some of those, as is this website. You do have to be careful about your sources as some of the popular autism charities/information sites are a bit misinformed, but the NAS is good and anything written by someone who is on the spectrum themselves tends to be as well. Slight smile 

    Having good days and bad days is very normal- everyone does! Ours can just be a bit more... obvious. Stuck out tongue

  • One thing I used to do very often as a child was have a long string of "good days" and then a complete breakdown out of nowhere.


    Of course, it wasn't out of nowhere- it was the strain of experiencing all this difficult extra input and putting effort into acting like a non-autistic person (we sometimes call it "passing" or "masking" and we sometimes do it without really realising it when we are young. It's basically observing and mimicking the other people around us in order to fit in and not become a target of negative attention).

    Lots of us are very very good at learning to do that. I was- my parents always knew I was somehow different to my brother and my peers (they didn't know what ASD was in order to properly ID it), but I wasn't flagged up by school until I was 14 or diagnosed properly until I was 17. It really takes a lot of effort though and truly drains you, so by the time you get home where you are safe from that negative reaction and able to express all the pent-up tension, you go to bits.

    It's very common for the parents of an undiagnosed autistic child to be in despair because their child is a nightmare at home, but when they bring it up to the school the teachers are astonished- that child is always quiet and well-behaved and academically doing really well and how could anything possibly be amiss? 

  • Yep you are so right. The Paed said although they ask school they don't take their word for it as children are often absolutely fine and stable at school due to the structure. My son is fine and only has a wobble if in instructured play etc. Luckily they can see that he wld be a handful at home.

    I really appreciate all your advice it's opened my eyes a lot more. Just because he may be slightly autistic compared to maybe another child on the spectrum doesn't mean anything. I need to get that out of my head as he is his own person. He's cool too haha. I will read that book thank you to you and Inkpen. My problem is after all this time threating and worrying I have an answer to help him succeed and I'm over thinking it.

    Thanks Emma so much

  • HI! I'm new here too and what you have described sounds a lot like my boy. He's 9 and we have only just started the process of being diagnosed. I don't know much about separating behaviour as I'm just getting to grips with it all myself but just wanted to say hi and to let you know I'm in the same boat as you and you aren't alone with the confusion!

  • You're very welcome :) anything else, don't hesitate to ask. 

  • It's hard isn't it? One day OK next day not. I've seen a Paed for 4 years so I know they are right and I said I wld argue them to the end if they fobbed us off at the last appt but I didn't need to worry as he was clear that he ticked all the boxes for aspergers and now I'm like....nahhh. I think I need to take a break from it all and appreciate my kids.

    How is your boy day to day? X