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Hi and Help needed feeling desperate

sarahjen

Hi I don't know where to start, i am feeling really emotional, angry and at my wits end.  I have 2 children 5 and 3, the oldest child has suspected asd, i have known there was something not right since he was really small but been fobbed off with, its just a stage he's going through etc etc.  Anyway he's in year 1 at school and he still hasn't got enough support, his vocabularys good but he can't read or write and is really struggling, he goes in to melt down almost everyday, hits his little brother and me and has also started been aggressive in school.  We cannot get through to him, that he is hurting others, he doesn't understand concequences and repeats the same behaviour over and over.  He is unable to do tasks upon request, no matter how many times we ask him.  He doesn't have any friends and social events, childrens parties etc he will cling to me the whole time.  Often he gets very anxious and will refuse to do things, such as swimming lessons etc.  Everything we do is a struggle with him, it hurts so bad cause hes a lovely child but i can't get through to him, i don't know what to do, Do i carry on taking him to partys? in the hope he will get used to it or am i damaging him further by forcing him in to situations hes not comfortable.  It breaks my heart cause i love him so much and cause hes not been diagnosed we have no support and no idea how to deal with it, this is why i'm so angry, all i get told is the spectrums so wide and each childs different, this seems a cop out to me.  Does anyone actually understand this condition really and how to help a child with it.  Sorry for the rant but just need some advice from someone thats experienced any of this and how to manage it.

Parents

  • In reality, if people would agree, there are common elements. Recent research has identified areas in the brain that differ from non-autistic people, particularly affecting recognition of facial expression and awareness of environment.

    The notion that everyone is affected differently isn't really a cop out - there are different degrees of manifestation of autism traits, plus comorbid elements (other conditions that occur with autism like dyslexia, ADHD, OCD) and then personality elements make a difference to the impact, so there really isn't a standard blueprint, although one of the curious things about autism is you can read about yourself in a text book.

    The fundamental baseline feature is perhaps, that if you cannot make sense of your environment or communicate as effectively with others, there's a lot of work involved in just trying to compete with non-autistic people on their terms. There may not actually be such a big problem if you don't have to compete in the non-autistic world, which is why people choose solitude and isolation.

    But you can develop coping and compensation strategies.

    I think the things to suggest are that if socialising, such as parties, isn't easy trying to get him to get used to them isn't something you can do. Going swimming may involve sensory issues, noises and smells and proximity of people and strange environments, trying to keep going swimming with him won't make it any easier.

    Meltdown represents stress, and hitting out may be a defence against sources of pain he doesn't understand. If people inflict perceived pain......

    There are however parents on here going through similar experiences with children that age. Also, even if not yet diagnosed, find out if there is a local Autism parents' group near you or a local NAS branch, where you can meet other parents (the red maps on the home and community pages on the NAS website can heklp you find local services, though they tend tio be a bit London-centric, and throw up London resources at the start, scroll down a bit).

    Not being able to communicate as effectively as non-autistics is a set back, but there are ways round it.

Reply

  • In reality, if people would agree, there are common elements. Recent research has identified areas in the brain that differ from non-autistic people, particularly affecting recognition of facial expression and awareness of environment.

    The notion that everyone is affected differently isn't really a cop out - there are different degrees of manifestation of autism traits, plus comorbid elements (other conditions that occur with autism like dyslexia, ADHD, OCD) and then personality elements make a difference to the impact, so there really isn't a standard blueprint, although one of the curious things about autism is you can read about yourself in a text book.

    The fundamental baseline feature is perhaps, that if you cannot make sense of your environment or communicate as effectively with others, there's a lot of work involved in just trying to compete with non-autistic people on their terms. There may not actually be such a big problem if you don't have to compete in the non-autistic world, which is why people choose solitude and isolation.

    But you can develop coping and compensation strategies.

    I think the things to suggest are that if socialising, such as parties, isn't easy trying to get him to get used to them isn't something you can do. Going swimming may involve sensory issues, noises and smells and proximity of people and strange environments, trying to keep going swimming with him won't make it any easier.

    Meltdown represents stress, and hitting out may be a defence against sources of pain he doesn't understand. If people inflict perceived pain......

    There are however parents on here going through similar experiences with children that age. Also, even if not yet diagnosed, find out if there is a local Autism parents' group near you or a local NAS branch, where you can meet other parents (the red maps on the home and community pages on the NAS website can heklp you find local services, though they tend tio be a bit London-centric, and throw up London resources at the start, scroll down a bit).

    Not being able to communicate as effectively as non-autistics is a set back, but there are ways round it.

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