Autism and Aspergers
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New here - advice needed re son with Aspergers

tartanteddytartanteddy Member Posts: 4 Listener
edited February 2017 in Autism and Aspergers

My son was diagnosed with Aspergers about 8 years ago. Initially as he started at primary school it was a major issue. As he moved up through primary it became less of an issue. He was a confident, witty, articulate, albeit rather quirky boy with lots of friends.

The issue has come with him now having made the transition to secondary school. He is in year 7 at a grammar school. He has had issues with organisation and has been overwhelmed by the amount of homework. The SENCO has been next to useless and when she observed him in a lesson said he appeared distracted and was fiddling, his shoes were on/off etc. However, she did admit that although he appeared distracted he was aware of what was going on in the lesson and was able to answer questions. She asked us to go for an OT referral, which we didn't feel was necessary, but went along with it. As expected, at the OT appointment she agreed that he didn't need OT involvement but needed to be supported in school and wrote a report detailing interventions and strategies.

Socially, it has been a nightmare for him. He has really regressed and become really introverted. He says he hasn't got any friends which absolutely breaks my heart. He says he doesn't know whether people are being nice or horrible to him - not knowing how to read people. He also says that he doesn't know how to start a conversation and what to talk to people about. His form tutor tells me that he is a very quiet member of the class, which he wasn't at primary. He does have people to talk to but doesn't actually class them as friends. He says he has never felt sadder and absolutely hates school. He has mentioned some incidents, which other children may brush off as nothing, but he is overthinking things and letting everything affect him.

I really don't know what to do. I don't feel that  the school are being very supportive, but also understand that there is only so much they can do re my son socially. I feel he is just being left to flounder. I have looked for support groups locally but there are none. I am taking him to the GP next week as I wonder if he needs a CAMHS referral.

I would REALLY appreciate any advice anyone can give me on this as I really don't know where to turn and really feel I am letting my son down.

Thanks

Replies

  • [Deleted User][Deleted User] Posts: 0 Pioneering
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  • tartanteddytartanteddy Member Posts: 4 Listener
    Thanks very much both of you for your reply. Am trying to be proactive - got a gp appointment on Monday where I want to discuss Cambs referral. What should the school be doing, what is their responsibility in all of this? 

    He he also is the middle of 3 boys and doesn't really get on that well with his brothers either, whereas the other 2 get on.

    Do I need to look at him getting an EHCP?I'm assuming that if we did that it wouldn't come with any funding as he is high ability.

    I feel lost at sea at the moment and don't know where to turn. If I am feeling like this.. well ...

    We did explain to him about Aspergers last summer before he started at secondary. I gave him a book to read as well and asked him questions etc. He didn't seem bothered at the time. I just don't want his Aspergers to be what defines him. 
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  • bubblybubbly Scope Volunteer Posts: 26 Connected
     Tartanteddy it sounds like you are having a tough time at the moment.

    an ehc plan looks at education needs, health (including mental health) and care needs. Just because he is bright doesn't mean he doesn't have support needs- such as support around socialising. This should all be taken into account when putting together a plan.
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  • joannarashellejoannarashelle Member Posts: 135 Pioneering
    Hi @tartanteddy I'm on the spectrum and after reading what you say about your boy I know he's going to be ok because he has you as his mum. 
    The best help you can give is what you are doing. 
    Compassion patience and learning about the condition. 

    I have only just just been diagnosed (I'm 46!) but as a a child I struggled (and still do) socially.

    But your son has a secret weapon, you. 

    And with your understanding he will excel! 

    I have always had an almost spiritual affinity with animals, as a child I would creep downstairs during the night and encourage our dogs (and cat and mice I kid you not) to sleep on my bed with me, comfort like nothing else I could get from animals. 
    It may sound simplistic but lots on the spectrum have found inner peace amongst animals. 


    Feel good about yourself because to me you sound the perfect mum 


    Joanna 
  • bendigedigbendigedig Member Posts: 254 Pioneering
    Hi Tartanteddy,

    My son and I both have an Aspergers diagnosis.

    try not to worry or stress about it all.  I know from e perience that this can be counter productive.

    i know how heart breaking it is though,  the friendship thing,  the apparently useless school staff etc. And yes somtimes they are useless!

    just keep accentuating the positive and keep fighting his corner.  The people that can help your son are few and far between.  I know because I have experienced similar.  its important though to keep expecting support and help. There are people that care, you just have to look for them.

    If they arent getting it right for your son then you can always take it up with the LEA.  Be careful though they get a bit deffensive and close ranks a bit if you draw attention to their failures to provide for your son.

    i think its not easy for everybody concerned.  Sadly it would be better if the Teachers were better selected/trained.  Its all very complicated though.

    you deffinately have my sympathy.... Weve had some hellish experiences putting our son through Primary.  Weve just had him moved to a different school in his final primary year.  We should have done it years ago.  I know though that because of the stink we kicked up at his previous school that theyve had to make some changes that have bennefitted other kids.

    Sadly I think somtimes youve just got to do the best with whats available.

    good luck,  you are not alone and neither is your son.  That may not be of any consolation or help but remember there is strength in numbers :)




  • tartanteddytartanteddy Member Posts: 4 Listener
    Thanks very much got your reply I am sitting here in tears at the moment. I honestly don't know what to do or where to go. 
    When my son was originally diagnosed with Aspergers it wasn't so much a big deal - he was really supported in primary school. He came off iep in year 3 and everything was fine. Tonight I have had an email from his firm tutor alerting me to the fact he says he's not sleeping - I didn't know. Both me and my husband work full time and to to be told that is just heartbreaking. When he was diagnosed we were given the option of applying for him to be disabled- which at the time I thought was ridiculous. However now I feel me and my son just need help and don't know where to get it..Weny gor a referral to camhs to be discharged without even being seen as obviously not bad enough. .Where do I go from here?! Apologies for any spelling mistakes btwZ
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @tartanteddy
    I imagine that the news of your son not sleeping coming from his form tutor is distressing enough.  Never mind all the other stuff thats worrying you.
    Its great that your son had what seems to be a positive experience of Primary School.

    transition from Primary to Secondry is notorious for throwing up issues that didnt seem to be there before.  Its not uncommon for children who seemed to be well integrated in Primary to end up spending lots of time in a secondary Learning Support Base (or similar) because they find the whole Secondary experience totally overwhelming.

    right now its a time to lead from the front.  Demonstrate to your son that he is not alone...  You and your husband know this already of course but the secondary school is a lonely place for a lot of kids not just those with ASD.  Get his siblings on board with this too!  Its time for everybody to chip in a bit, to realise that acertain family member needs alittle extra support.

    Lots of communication with the school is a good idea.  Keep close contact with staff that you feel you can trust.  Work on those relationships, sometimes learning support workers and or ancilliary staff can develop better relationships with ASD pupils than their teachers.  This is worth enquiring about.  @DannyMoore has it right I think.  The whole experience (and there is potentially a lot to the whole experience) of Secondary transition is overwhelming your son perhaps?  Just like DannyMoore said though, its crucial that you get the school to stop moaning about homework and or accademic performance etc.  If they disagree embarrass them by citing "Maslows Hierachy of Needs". Somtimes teachers need to be reminded about what is going on.   Often its not their fault that they loose sight of the individuals needs but unfortunately it is a specific requirement of thier role.  Im not sure what the context was when the SENCO brought up the matter of slipping shoes on and off and fidgetting etc?  It wasnt by way of complaint I hope?  The SENCO is probably concerned that these behaviours are consuming your sons attention.  This in turn is obviously not conducive with learning in the classroom.  SENCO' s get a lot of referals about pupil behaviour from classroom teachers,  these referals are often borne out of concern that the behaviours mentioned may infringe upon the learning of the individual in question but unfortunately they sometimes are motivated by the potential disruption that may arrise to other pupils in the classroom!  Whatever the reason. The SENCO needs to work with you and your son to ensure that his integration in the classroom tackled sensitively, intelligently and should above all be centered around improving your sons sense of security and creating an environment conducive with learning for him.

    it's not just your son thats growing up,  so are his class mates.  They will all have varying degreesof emotional maturity.  I think good teachers should try to foster a climate of support in the classroom.  That pupils should where possible be encouraged to support each other.  Is this something that could be explored in the case of your son?

    The school has to work together in a coordinated way to ensure that your son feels that he is valued and understood.  Your son needs help to understand that he can trust those members of staff that are given specific responsibility for his pastoral care.  If he doesnt trust these people then they need to work closely with you to ensure that this trust is built.  Getting it right can take a long time..... Sometimes, not for the want of trying it is never achieved.  Its still eRly days yet though isnt it?  

    I think that you seem to be right on top of things :)  you seem to be taking your sons transition very seriously, which is good :). Dont let the info about his sleeping upset you too much.  Its good that the form tutor was able to alert you! Thats a good thing!  It means they are doing their job.  If theve been in touch with you to inform you of this, im fairly sure it was done out of a duty of care and not to embarrass you because you felt you should have already known this?  If your sons form tutor knows this information then there is somtning of a dialogue.  Tnis too is good.  This perhaps is somthing that could be worked on?

    Your son will, like the majority of young people in Secondary have to develop coping stratergies to deal with people that he finds "problematic".  The sooner the school and the staff specifically concerned with your sons pastoral care  identify where these issues are if indeed there are any,  the better.

    Its really important not to forget about what your son is having success with.  Celebrate his successes and try and get the school to do this as much as possible too.  Is there anything that your son is particularly passionate about that could help the school to celebrate his abilities and or encourage his interests?  

    I'm also very consious of the fact that I know very little other than what Ive read here.  Dannymoore has it right though.  Accademic learning must take second place in terms of priority at the moment for your son...  Social and emotional adjustment is what needs support and nurture at this sensitive time.  It sounds like you have relatively good communication with the School Staff concerned with your son....Keep working at that and try to gently encourage them to get it right for your son,  they do want to get it things right for him :) try and get as many inputs as you can from as many education and health/care practitioners as you can, i think it all helps.  Use what works and put the rest on the backburner.

    i think its dead important to let him know that he is supported without him feeling that there is too much fuss.  Try your best not to let your emotions cause him any concern, confusion or doubt in whats going on around him.  This is easier said than done, I know but somtimes its better to hide how you feel about whats going on in his world.  Somtimes its better if he is totally under the impression that you are in controll and thatyou are going to try and sort out any problems he might have?  at least that is, until he develops a bit more confidence about coping in his new surroundings and with the new people he is encountering.
  • bendigedigbendigedig Member Posts: 254 Pioneering
    edited May 2017
    joannarashelle says together you will all get through it.  

    Just remember, if your son was able to be popular and make friends in Primary, once he has sussed out the "rules" of Secondary and finds his place, he will as likely as not become popular and make friends there.  Once the school get his trust they will be able to work on things with him.... You just need to make sure that they are getting it right for him.... Dont expect things to improve overnight but dont despair or give up either, try to keep looking for successes and not failures,  I know thats so difficult somtimes but if the successes are overlooked or ignored this can be counterproductive.

    Pretty soon my son will be experiencing the same transition.  My son crawls under the table in the class room during lessons when he feels like he cant cope.   Unfortunately the Primary School weve just taken him out of exaserbated the stress and discomfort in so many incompetent ways.  Hopefully weve seen the back of my son crawling under tables.  Fortunately, like you we have been there for him :)

    I hope I havent just been stating the obvious.  If I have, then Im so sorry.  I know though that somtimes it helps just to know that you are not alone.  Just remember that you aren't alone.  Wishing you all luck,  I realy hope that things start to improve soon.  I dont bother going to The National Autistic Society for help or advice for various reasons but you could give them a try, nothing ventured, nothing gained.  As an adult seeking advice myself I mostly use Autism Initiatives,  I dont know how they are fixed in your area if you have them.  I know here they are looking at working with some people of school age too.  Could be worth a try?  Dont miss out on the dedicated ASD advice here in the Scope community too! Look in he section "talk to a community advisor" :)
  • bendigedigbendigedig Member Posts: 254 Pioneering
    @tartanteddy
    forgot to mention! 
    im the last person to apologise to about spelling by the way!
    i rarely proof read what Im posting.  I have a dyslexia diagnosis too.  I dont worry too much about posting here.  Im not working after all!  If somthing ive said doesnt make sense though, just let me know, ill try and decipher it :)
  • tartanteddytartanteddy Member Posts: 4 Listener
    Thank you both for your support - it's really appreciated. I feel very alone with this at the moment so it's really good to know there are some nice people out there. Just thanks x
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  • bendigedigbendigedig Member Posts: 254 Pioneering
    @dannymoore

    I love the way you have described them as ghosts!

    "when good people do nothing"

    Does this make them facilitators and apologists?  I'm afraid that very often that is exactly what they become.

    When the sheeple learn to roar instead of bleating, thats when we may begin to see some changes for the better in our society.

    Until then Danny people like you and I will for the most part be surrounded by "ghosts"
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