New diagnosis HELP>>>>>>

Hi, Our daughter has just been diagnosed finally with Autism and ADHD. She is 6 years old and has just started spitting and screaming along with her meltdowns. We are not getting any help or advice from our Paediatrician or GP so I thought I would ask anyone for some tips. She has help at school through her SENCO and O/T. We have tried counting with her to 10 and doing the breathing exercises but as she does not know she is doing anything wrong this is very hit and miss.

Parents
  • This may sound like a silly question (apologies if it is), but have you sat down with your daughter and talked to her about the things that make her upset? She may not be able to verbalise this or she may find it hard to explain, but it just occurs to me that communication with a child with autism is really key to understanding how to help them deal with the things that are bothering them. 

    If you don't know what's triggering her, it is hard to know how to manage it.

    I wasn't diagnosed as a kid, and I had a lot of misunderstandings and problems with people because of it. My mother thought I was defiant because she'd tell me not to do something but I wouldn't understand that two incidents were to her the same thing, to me they were different if they happened in different places/with different people/at different times/on different days. And I had a lot of bad experiences at school being repeatedly punished by teachers for 'defiance' when I didn't actually understand what was going on. You said your kid doesn't understand she is doing something wrong - but is she actually doing something wrong or is she doing something that you don't understand? There is a tendency to assume that autistic meltdown behaviours are 'wrong' but that's negative and doesn't resolve what causes it, thus can't possibly stop it. All it can do is make the kid feel worse for doing something to make you upset.

    It sounds to me like your daughter is trying to tell you something is really freaking her out or scaring her but she hasn't found a way yet to make you understand what that is. It may be that school is part of that as well. It certainly was for me, but because everyone always told me off, I didn't know how to explain how I felt to anyone. I just felt like a bad kid. Your daughter has only just been diagnosed, so she may already have experienced 'bad kid' mentality issues as well. 

    I don't know your daughter so I may be way off the mark and feel free to ignore all or any of what I said. Just, as a person who has been that little screaming, kicking girl with autism, I really want to try and help you and your daughter going forward. Autistic kids have a lot of potential locked up inside of them, but you as her chief supporters are so integral to that process that the sooner you begin, the better.

    I would much rather parents spoke to their kids about the issue before talking to other parents about it. Other parents are not your kid with autism. Unless you hear the kid's own concerns (if she is able to voice them), you are still only working on assumptions. Once you know how your kid feels, then you can go talk to other parents and compare notes...but if you just rely on non-autistic adults to tell you what to do, you won't ever get into the head of your autistic child, and that really needs to happen as early as possible so she can go on to live the best life she can (and so can you!).

    Also, your daughter is herself. So her triggers, needs, issues will be somewhat unique to her and her situation.

  • Hi, Thanks for your reply. We have asked her why she gets so upset and she always says I don't know. Some of the words she uses sounded like "playground bully words". As school has broken up I will have to talk to her teacher after the holidays and see if maybe she is being bullied by some of the less understanding children. The counting to relax does sometimes work as does the cuddles to reassure her. We always knew she was different to her peers, however I would rather have 100 of her than some of the children around her. We have a very caring and helpful family, we are just having to relearn to parent as her older sibling does not have any learning difficulties. We are having a meeting in a couple of weeks with her Occupational Therapist at home and I think I have all bases covered, however if there is anything I should be asking her any suggestions would be great.

Reply
  • Hi, Thanks for your reply. We have asked her why she gets so upset and she always says I don't know. Some of the words she uses sounded like "playground bully words". As school has broken up I will have to talk to her teacher after the holidays and see if maybe she is being bullied by some of the less understanding children. The counting to relax does sometimes work as does the cuddles to reassure her. We always knew she was different to her peers, however I would rather have 100 of her than some of the children around her. We have a very caring and helpful family, we are just having to relearn to parent as her older sibling does not have any learning difficulties. We are having a meeting in a couple of weeks with her Occupational Therapist at home and I think I have all bases covered, however if there is anything I should be asking her any suggestions would be great.

Children
  • Hopefully it's not bullying, as she's off school now for 6 weeks I will monitor it to see if there is a change. The Paediatrician has not mentioned Synesthesia at all however every time we go back they are finding something new. She has appointments with the O/T and the Psychologist again soon and we are expecting more. Autism is such a broad  diagnosis isn't it?

  • Meltdown is definitely different from tantrum. The colour thing is great though. Another thing occurs given her various needs - does she have synesthesia? If so, maybe it will be possible to firmly ascribe colours to feelings and then she can tell you if she's had a red day or a blue day or a grey day...if that makes sense? Sort of a euphemism code between you to help her figure out her emotions, what makes her feel a certain way and how to tackle it if there is a problem.

    She might not be being bullied, kids sometimes tease and that can be misunderstood when someone is struggling with understanding social interaction. I remember one incident when some of my friends played a silly prank on me. I got really angry and I threatened to leave the school and go somewhere else because of it! They were freaked out and told me it was a trick and then I felt silly - but I really didn't get that it was a joke.

  • There are a couple of little angels at her school that do use the words she says in a meltdown. Hope she is not being bullied, talking is good with her and I might try for her bedtime story getting her to join in with feelings etc

  • She can't write properly as her Hypermobility makes her writing quiet scruffy, but were getting there with a slope board and a rubber grip. She loves crafts and colours and I pick up a lot with the colour she chooses to use, ie black and grey for sad days yellow and red for happy days. I do think it's when she is overloaded her meltdowns are worse but even if I say NO to her with no overload a little meltdown will occur (Not a tantrum as some people seem to think)

  • Good answers here. Worth checking about bullying. I'm not a parent nor an expert, and don't take anything following too seriously.

    Emma mentioned 'alexithymia'. It seems about half of autistic people find it very hard to know or say what they're feeling, so that may be why your daughter says 'I don't know' so much. Learning to understand yourself is hard and maybe needs lots of conversations.

    The diary is a good idea. I'd suggest recording positives as well as negatives to help you see any pattern. Besides a sensory hypersensitivity, there can be hyposensitivity and a need for a particular stimulation (hence stimming). Not being able to feel or make sense of bodily sensations is common (poor 'interoception').

    Rather than just asking the reason for any upset, you might want to encourage her to explain more what she's thinking, and if there's something at the back of the mind she's trying to keep out. How about prompting with names of emotions rather than 'upset'? Something like 'I think school was exhausting today. Am I right?' or 'Are you afraid you're not going to know what to do when X happens? We can talk about it.' Maybe increasing emotional literacy through stories and asking what you would do in a character's shoes...?

  • I am having lots of trouble with getting the pages on this site to load so I hope this will work :)

    If she is using terms that sound that way she is probably picking them up from someone in her peer group. I don't know if she is being bullied or feels that she is. Does she like going to school or does she become anxious going? That might give you a clue. I had periods when I was being bullied that I would freak out about going to school - and come out at the end and take it out on my mother like she'd sent me there to upset me. Obviously neither of those are good things! I used to hit or kick, I never spat - but maybe if someone at school did that (not necessarily to her, but just in general) perhaps she's copying.

    The reason I asked about the counting and the cuddling etc - if you don't know what is triggering the upset, then it's great those things work but it may be more difficult for her to associate the comfort or rescue options with the problem she's tackling. That means that if she doesn't connect deep breathing to being upset about something, she's likely to still get upset but not be able to deploy the calming mechanism without your prompting. I don't know if that makes sense, but I find that I still often see things other people view as 'the same' as different situations. So to try and give an example, maybe the sound of music in your house doesn't bother her, but maybe in the car it does. I am obviously inventing that but just that triggers are not always 'the same' in the non-autistic definition of same...sometimes they are a combination of things coming together. And sometimes it is difficult to explain why we are upset. It is obviously so frustrating for you because you obviously care a lot about her and want to help her. The OT is a great idea as well since they can probably give you more insight.

    Does she like to communicate ideas in other ways? Does she like drawing? Making patterns? A TV show she really likes that you can maybe use to present examples to her and see if anything resonates? Autistic people's communication can sometimes be anything but verbal...so I suggest trying to be creative? I don't know if she reads or writes yet, but maybe there's something you can use that's detached a little from talking directly about her - sort of a hypothetical description? I find it hard to say if something upsets me, but I can theorise on a problem and describe it.

    One other possibility is simply too much stimuli. Colour, sound, texture, people...smells...all of these things sometimes collide together to overload autistic brains. Since she also has ADHD it sounds like she might get overloaded a lot anyway. There may not be one reason she's upset. It might just be the fight or flight panic impulse.

    I really hope some of this makes sense ;) I can tell you really love her and want to help her, so I want to help her too. My disclaimer is that I'm speaking as an autistic person, not as a qualified professional.