Feeling desperate

Hi, looking for advice please. Our 6year old son is currently on the waiting list for an ADOS assessment. We’ve been back and forwards between community paediatricians, speech and language therapy and various other agencies since he was at nursery. We’ve filled in various forms and questionnaires, as have the school, but between appointments we just seem to be left hanging for months on end. We suspect he has Aspergers and ADHD. The school have been good in many respects and the SENCO has put things in place for him even though we don’t have any kind of diagnosis yet.

Just recently he has been getting more and more difficult to manage. He can have a meltdown one day over something that he took in his stride the day before. We feel like we’re constantly walking on eggshells. He is incredibly demanding and we’re completely exhausted. There is just no break and we feel like we have no support. We also have 3 year old daughter who we believe doesn’t have autism but has started to copy some of his behaviours. We are just at breaking point and can’t see how things are ever going to get better.

Parents
  • Hi and welcome to the forum Slight smile

    Your post reminded me of one from the parent of a similarly aged girl I responded to last month. I think it would help you to read the advice myself and others gave to her re. meltdown management
    https://community.autism.org.uk/f/introduce-yourself/12975/new-diagnosis-help

    I think that the reason he seems to take something in his stride one day and have a massive response the next is due to the nature of the autistic meltdown; they aren't the same as a tantrum reaction to a single triggering event. They are the culmination of many unprocessed negative triggers (emotions, sensory stimuli, etc) that can no longer be contained and so the child experiences an emotional 'explosion'.
    The event that triggers the outburst is rarely the only contributor to it, so if he hasn't had as much to cope with the next day the same thing might be something he can deal with.


    Things will get better. 

    The time just prior to diagnosis is always hard, because autism's usually first noticed when the challenges become glaringly, unbearably obvious. 

    Times of change are hard too; many of us are first 'flagged up' around the point of a school transition, for example, because that's when things become harder to cope with. 

    In the meantime, the school seems to be doing things right which is excellent and you have the support of this forum and the helplines Graham mentioned.

    Ask anything you need to, 

    Emma

Reply
  • Hi and welcome to the forum Slight smile

    Your post reminded me of one from the parent of a similarly aged girl I responded to last month. I think it would help you to read the advice myself and others gave to her re. meltdown management
    https://community.autism.org.uk/f/introduce-yourself/12975/new-diagnosis-help

    I think that the reason he seems to take something in his stride one day and have a massive response the next is due to the nature of the autistic meltdown; they aren't the same as a tantrum reaction to a single triggering event. They are the culmination of many unprocessed negative triggers (emotions, sensory stimuli, etc) that can no longer be contained and so the child experiences an emotional 'explosion'.
    The event that triggers the outburst is rarely the only contributor to it, so if he hasn't had as much to cope with the next day the same thing might be something he can deal with.


    Things will get better. 

    The time just prior to diagnosis is always hard, because autism's usually first noticed when the challenges become glaringly, unbearably obvious. 

    Times of change are hard too; many of us are first 'flagged up' around the point of a school transition, for example, because that's when things become harder to cope with. 

    In the meantime, the school seems to be doing things right which is excellent and you have the support of this forum and the helplines Graham mentioned.

    Ask anything you need to, 

    Emma

Children
  • Hi Emma, thank you so much for your advice and insight. Your explanation of things building up and then the meltdown being a response to ‘the final straw’ really helps. He has been anxious about moving up into the next year group at school and although it’s currently school holidays and he hasn’t been mentioning it, I’m sure it’s been on his mind.

    We’ve been school uniform shopping for him today. At first he was shouting that he hated shopping and didn’t want to go. I cuddled him and asked if it was shopping that was the problem or the fact that it was for uniform and he didn’t want to go back to school. I acknowledged that we understood he was worried about going back and gently pointed out that he knew he had to go back to school whether we bought new uniform or not. I pointed out the benefits of getting it as his old uniform is getting too small and he doesn’t like feeling uncomfortable so new clothes that fit would feel better. This really helped although he flipped from not wanting to go, to being hyper for the whole trip.

    I’ve also read your advice to the other parent on the link you included. It was fantastic, thank you and really struck a cord.

    Thank you so much for your advice and support.

    x