Meltdown Screaming & Neighbours

Post Reply New Topic

How do you deal with this situation? My youngest has regular meltdown tantrums which involve copious screaming, some of which sounds like something awful is happening to her. Having a very bad temper, and I suspect a language disorder (she doesn't understand many simple things even though she is exceptionally intelligent and verbal) she also screams out things which would be easily misconstruable and also which usually have little relation to reality (she lies terribly).

I'm a private person, and have AS myself, so I have never been one to get to know neighbours and be social with them. I find the whole situation really stressful, because I know if I lived nextdoor to a family that had constant screaming going on I wouldn't like it. They appear very standoffish people anyway, they have for a long time parked illegally on the corner of our driveway, chopped off two branches of our tropical plant that very slightly overhung their garden but that weren't causing a problem (which I know they are legally entitled to do) without saying a word to us, and rang social services because of the screaming from my daughter, without coming to knock on the door first to see what the reason was tactfully. So all of this adds to the stress of dealing with my daughter's awful behaviour.

I've tried every method I can think of to deal with her behaviour, as you parents of ASD children are aware, the normal methods don't work on children with ASDs.

My daughter is so bad I am going to the GP tomorrow to ask for medication, to insist on it, because there is now no other option. She is making me ill, causing my other daughter immense distress, and it is distressing for her herself too. She is able to be off singing within minutes of over an hour's screaming whereas I am left distraught from the stress and overload from it all. She has been referred to mental health services for her anxiety but we face an 18 week or more wait and she is having her AS assessment in January. The assessing centre has already questioned what help I think we will get if she gets a diagnosis, so that sounds as if there is little available, and I am the one living with this hell.

I am so sorry.

Have you figured out if there is any pattern at all to her meltdowns? Is there anyway to adjust her environment any more than you have? Is there anything that soothes her? I know you have probably thought all that through, but I don't know what else to tell you to do while you wait for the doctor's appointment.

I'm also sorry - I remember having this fear when DS was little, but if you've already handled social services you are fine. Might not be a bad idea to reach out to the local police department and life safety services to find out how they manage kids with autism, just in case your neighbor decides to step it up (which they may or may not.)

If you think about it, your neighbors actually did the right thing, much as it sucks for you: they have no way of knowing you have a special needs child, and were acting in the child's best interest. I suppose if they were simply annoyed with the noise, police would have been the first call.

Not sure how to handle things going forward, but what about simply making sure you visibly participate in all the stupid autism-support related stuff? You know, "puzzle ribbon" on your car, blue light in your entryway, etc. Maybe they will get the hint. (I totally understand why you might not want to do this on multiple levels, but it does give everyone a signal that there's a reasonable explanation, and hopefully they will be understanding.)

Hey, I'm an adult with autism - not Aspergers - who's been evicted from apartments - that I paid for - because of my meltdown screaming and head banging against the wall. Also been put into 72-hour hold and arrested, had problems with jobs because of having to explain all this. My boyfriend investigated for domestic violence because of biting and cutting. Medication isn't going to "stop it", it actually might make it worse and I've tried it all. This is a part of people having autism that can be discombobulating to then neurotypicals around them.

The thing I do immediately after moving into a new place are coming out to everyone, maybe wearing an autism awareness button, and carrying a medic-alert card and bracelet. It's good that you've spoken to social services. Also what's going to help your kid is keeping a daily routine and keeping stuff like noise and light levels down. Ear plugs, stuff like that helps, maybe joining an autistic parents support group.

You are not alone! We are here to help!

Thanks all for responding so quickly.

ASDMommyASDKid: it's usually over something like her wanting a specific and exact answer that only she knows, that she expects you to know, and even when you ask her what answer she wants you can get nowhere, or when it's meltdowns outside it's either the same thing or sensory issues, but this has meant we are virtually housebound now because she doesn't want to go anywhere. I have bought her earplugs, but she's also scared of crowds and has phobias about the volume of things (as in amount) so e.g. if there are a lot of leaves on the ground she will be terrified. At home it's usually either the answer thing or that she perceives she was being ignored even if she wasn't. It's like a no win situation because there is often no logic to her perception.

momsparky: thanks for your recommendation. We were already 'in the system' for ASD assessment before social services got called, and they could offer no support without having the diagnosis yet. It just really stressed me out them being involved, because an awful admin manager at the assessment unit said to me when I called upset about her behaviour, "if you can't cope social services will come and take the children away and put them in a care home." This would be awful enough for anyone to hear, but as an Aspie I took her so literally and when SS called to come round, I thought that was why they were coming and it made me highly anxious as you can imagine. She had also referred us to SS (unknown to me) so at least when the neighbours called they were aware that we had a child with special needs and it wasn't as if they were just coming expecting to see some sort of awful situation with a mistreated child. I will investigate the ribbon etc., we are in the UK so I don't know where to get them from but I'll start with the NAS.

EsotericResearch: we do have a routine, and I do ensure noise levels are down, because I have AS myself I can't bear loud noise (I wear earplugs just for the noise the children make). I have already got her a badge that says "I can't always control my behaviour I have Asperger's" but she doesn't want to wear it and we don't have the official DX yet anyway. I've investigated local support groups, there is one I will try to get to and I'm sure they will be great, but dealing with the behaviour in the moment is horrendous. I was the passive type of AS child and all these meltdowns (which I also had with my eldest when she was younger) absolutely kill me. She's getting more and more violent too, she threw a slipper in my eye recently and ever since has threatened to do it again, today she was saying she would kill me (she's only 7 though!) and she says to me "how dare you" and thinks she's in control, so defiant, even though I am no pushover.

She's made me so unwell I've had stress-related vertigo since August, I'm on medication for that, anti-anxiety medication and a 2 day headache which painkillers won't touch. Other than her behaviour she's adorable...

Thank you all for the support. Any more words of advice much appreciated. I'm feeling very low today.

Oh, boy, am I familiar with this. With reference to wanting the unknown scripted answer, we have largely surmounted this once our son was finally able to understand that I had no idea what he wanted me to say. I don't think it was anything I specifically said, so much as it was him finally being able to understand that I could not help it. He still likes to "direct" the conversation much like an act in a play, but, he is now willing to "feed me the lines," as it were.

It took many meltdowns and tears, though. I would suggest laying the ground work either by explaining or making a social story about how people can't read other people's minds. Repetition. Repetition and more repetition. I still get some of this when he is upset, and wants me to validate some ridiculously negative line of thinking etc. with some scripted answer; but in terms of non-meltdown daily conversation we are much better. I am not sure it isn't because he thinks I am too stupid to know my lines, but at this point I am OK with that. When he is already upset, I guess he forgets.

Sensory issues are tough, too. I would maybe start off taking her to places that are quiet, and un-smelly. Maybe a library, for a small amount of time, so she does not meltdown. When they are used to being home, it is tough to get them used to leaving. Home is where they feel safe. If she isn't ready for that,maybe at least give her some outdoor time near home. When our son was a baby I had to send my husband food shopping because he hated the smell of the supermarket. Then eventually when he was toddler age, we would all go, but I would stay outside the store and walk him around while my husband shopped. Eventually he could tolerate the smell, and he has acclimated to our weekend errands. We still have issues with weekday trips after school, even when he has notice, but it is so much better.

There is light at the end of the tunnel.

Thanks ASDMommyASDKid. I tried the library and even joined her to a very small reading group for her age range there, so she had an activity outside and potential socialising as well. She hated it and she doesn't want to go to the library at all now. I asked her where she thinks I can take her that she will like, and she says she doesn't know.

She does think I'm psychic and know what's in her head. She will say "you KNOW!" in a very agitated way and even though I assure her I don't she refuses to accept it. The trouble with meltdowns, is that I can see in her eyes that she has lost touch with reality during that moment, her eyes sort of glaze and she's totally in her head. She won't respond to attempts to calm her. Even when you give her what she wants she still carries on. During her mega meltdown today, she screamed "I want to stop but I can't" it's sort of like an alien force has got her in it's grip!

The sad thing is that she is ruling our lives and dictating what we do, and her sister loses out on things she wants to do (as well as me).

I am so hanging onto that light at the end of the tunnel!

http://www.autismawarenessuk.com/ They've got pretty much every kind of identifying item you could want. I actually like a lot of the bumper stickers for cars! (Keep in mind this site is a commercial one and NOT a charity, but a good place for ideas and at least another parent in the same boat. You can always use the ideas in creative ways on your own, if need be.)

Seems like the puzzle ribbon is pretty universal.

That is exactly how it was like for us. He expected us to KNOW.

Maybe prepare a social story to lay the groundwork for when she is calm. This takes some time for them to get, at least it did with us. Maybe think of a fun game where you write or draw something down you are thinking and she has to "guess" what you are thinking. Show her it is not so easy. It may be the light has to come on in her brain, but I don't think the repetition of these kind of lessons will hurt.

Yup. I get like that sometimes too, especially with the "you know" stuff and the alien force (as reported by my boyfriend). It could mean that your kid is a bit further down the spectrum than Asperger's - like me. I expected everyone to be psychic too - telling the social stories, and tons, tons of patience really works. Because it is so hard for the kid to "get" it.

Another thing that could work to calm them down is an ADHD med or caffeine. When I get into these moods, I find that caffeine is a relaxant. Ritalin worked a bit for me in the past, but caffeine is cheaper so I use that now instead. Remember also that this is hit or miss.

Thanks momsparky, I will have a look on that website.

Thanks ASDMommyASDKid, I will try the social story as many times as possible to see if it helps.

EsotericResearch: I have wondered if she's HFA instead of AS, because she did have a speech regression but she was so young when it happened (as a baby she started saying mamma etc. and then suddenly stopped and would only make mmmn noises to everything including questions, she went to speech therapy, she didn't start talking again until after 2 years old, but I don't think the experts will class that as speech delay due to the fact she was so young). Her sister used to also have very defiant behaviour and lots of meltdowns to a very bad degree, and she is being tested for AS as well, but my youngest is worse in some ways, such as her understanding level is worse, she frequently says you don't make sense and she gets confused.

Though I'm of two minds about the idea of "functioning" levels, my son is decidedly AS, no difficulty talking whatsoever and in fact talked very early, and he still expects you to read his mind. TOM (theory of mind) is a deficit that can appear anywhere on the spectrum.

I do believe there are functioning levels, because of it being a spectrum. My daughter is so intelligent, comes out with such long words and philosophical turns of phrase (frequently astounds me) has an exceptional memory, and yet she has the emotional behaviour of a 2 year old and despite being so verbal she fails to understand so many comments or questions. She also still needs me to wash her and cut food up for her, uses a spoon and fork instead of knife and fork, and she is a messy eater for her age. She will be eight in January. When I compare her to others her age she is so different. She is very niave and has low awareness of danger. Then if you compare her to someone lower on the spectrum they could be less than average intelligence, still in nappies and non-verbal. So surely there must be functioning levels. Her speech regression was something that didn't happen with her sister, they both have clear AS traits, but my youngest has more extreme obsessional behaviour than her sister did at the same stage, and she has always seemed more babyish. They have many similarities, but the speech issue ties in with the slightly worse overall symptoms in my youngest.

I read someone else on WP say that the term HFA is an unofficial one and not medically used, so I get what you're saying in that case, but I think the functioning levels just equates to the severity of the condition.

It's not that I don't believe there are functioning levels, it's just that the concept is so undefined and the word carries so much stigma.

For instance, every time I disclosed to a friend or family member that DS was on the spectrum, we'd have one of two reactions: eager "Is he gifted?" or reassuring "He's very high-functioning, though." Neither of these labels were appropriate for a boy who we had to take to the ER for suicidal ideation, or who was regularly violent both at home and at school. He also couldn't cross a street safely until (on a really good day) this year and struggles to use a pencil, knife and fork (he is now able, at 12 - but if cut-up food and a spoon is an option, that's what he prefers, and you can see the relief when he gets one.) He is now doing very well at school, to the point where we have to struggle for the services he needs because they don't believe us.

The problem with the "functioning" label is that all kids on the spectrum have deficits and strengths - I don't think it helps to define them exclusively by their deficits OR exclusively by their strengths, which is often what that label winds up doing. It also attaches a stigma to the kids on both ends: outsiders have expectations of "low functioning" kids that are usually far too low, and generally have too high - sometimes magical - expectations of "high functioning" kids.

I hear what you are saying in terms of your daughter's level of need and intervention and that your daughters are different, I just see how this method of framing it has negative repercussions as we and our kids navigate the NT world. I don't know what language to replace this with right now, but I have serious concerns about the word "functioning."

I see what you mean. Perhaps we should make up one of our own, after all we know more than the NT professionals what they are like as we live with them day in day out.

I would suggest writing them a friendly letter explaining it, giving them your phone number so they can call if things either get too loud, or they get worried.

Something along the lines of

"Dear Mr and Mrs Blank,

Our child, Blank, has Asperger Syndrome which is a form of high functioning autism (or whatever dx your child has). Sometimes this can cause meltdowns over the smallest thing and we do our best to gently calm him in the way that the doctor suggested. This can be loud, and sometimes things can be screamed that can be misinterpreted.

I want you to know that I do understand if this is bothersome or concerning to you. I do assure you that nothing untoward is happening when these occur, and you are more than welcome to call us at 125-456-7890 with any questions or concerns. If at any time, the noise level is bothering you, please do call us. We are aware that things can get loud, but when you are used to dealing with this, sometimes you forget how loud it can get.

I do appreciate the concern for my child, and feel that more people should be concerned with how children are treated. I am grateful for your understanding, and patience, and if you would like any information on this disorder, please do feel free to contact me and I can help you find the information you need.

Sincerely,

Mrs Blank