My role is to see children with ASD, Selective Mutism and complex communication difficulties. I don't mean complex needs, I mean complicated profiles and even more complicated situations. Many of these children are very anxious. I know that the more complex the case, the more simple my explanation needs to be. Time and time again, I see parents who describe their child one way and schools who see something different and completely refute what the parent is saying, even if they have the scratches and bruises to confirm it.
It is described as a 'delayed effect' or the 'pressure cooker' situation. I like to see it as 'the bottle of pop phenomenon'. the child keeps it together, maybe doesn't like to draw attention to themselves or can 'just about manage' until 3.30pm. There might be small signs, that someone who who knows the child well or someone experienced in childhood anxiety can spot, such as slight eye or vocal tic or the picking at the skin on their thumb.Then when they get home all hell erupts. The bottle has been shaken all day and the top comes off at the door. The door where they feel safe and secure with a parent who understands them, won't judge them or hate them whatever they do.
I've had this reported 12 times in the last few months alone, but there is little written about it which might help professionals understand that what they see isn't always the true picture:
It must be parenting, it must be the parent, the parent must be fabricating........ I think NOT!!! We need training for staff in spotting the (often well hidden) signs of anxiety. It can be directly related to language and communication difficulties as they struggle to cope to understand or fit in......bit like a swan paddling away furiously underneath. It's exhausting for the swan and he needs a break after a short time. It may also be related to sensory issues or both. One thing is for sure, the parents need support not disbelief.
It is described as a 'delayed effect' or the 'pressure cooker' situation. I like to see it as 'the bottle of pop phenomenon'. the child keeps it together, maybe doesn't like to draw attention to themselves or can 'just about manage' until 3.30pm. There might be small signs, that someone who who knows the child well or someone experienced in childhood anxiety can spot, such as slight eye or vocal tic or the picking at the skin on their thumb.Then when they get home all hell erupts. The bottle has been shaken all day and the top comes off at the door. The door where they feel safe and secure with a parent who understands them, won't judge them or hate them whatever they do.
I've had this reported 12 times in the last few months alone, but there is little written about it which might help professionals understand that what they see isn't always the true picture:
- the child with anxiety who smiles, so can't be worried at school
- the child who is sweet and polite so can't have sworn uncontrollably at their mum last night
- the timid, quiet child who can't possibly have inflicted those bruises because the lessons changed today
- the 'normal' child who does as he's told can't be demand avoidant at home
- The child who seemed happy for a new member of staff to take the class as he didn't say anything, can't have trashed the house when he got in
- the girl who said nothing in class can't possibly have had a melt down at home because they'd moved the cupboard to the other side of the classroom
- the kind, helpful girl can't have scratched her mum so badly she drew blood when all she was trying to do was to give the ipad to a man to take to repair
- the 'ideal pupil' who loves school can't really hang onto the door handle and fight both parents every single morning because he doesn't want a bath
www.private-speech-therapy.co.uk
So very true, many parents feel isolated and don't know who to turn to.
ReplyDeleteTotally agree as a parent sometimes people look at you as you are a liar, but we can spot the tail signs (well sometimes) but again well they look happy because why?? They're not screaming, throwing things, lashing out no because they are just about holding things together.
ReplyDeleteGod bless you! This needs to be on a poster in every professionals office.
ReplyDeleteThank you for this!
Thank you, thank you, thank you! I know it must be hard for people to imagine that your child could ever behave in the ways that you have described to them when they have never seen it, but why would we make it up?
ReplyDeleteThis is my beautiful 6yo daughter to the letter! She has an official diagnosis of Pathological Demand Avoidance Syndrome (on the Autistic Spectrum), suffers crippling anxiety and panic attacks. She is a master of withholding in environments where she doesn't feel safe ie school. I know that come 3:30 the lid will come off when she's in the safety of family/home...and I'm always there to catch her and put her back together again...until the next time.
ReplyDeleteI love your wording x
DeleteFinally! Someone who knows what they are talking about. I wish I had this article years ago however it will still come to good news now. Thank you!
ReplyDeleteI used to work with a little boy who had Aspergers. He was polite, well-behaved & a delight to work with. He went home & the lid blew off exactly as described. Every ounce of self-control had been consumed during his school day. I'm so thankful that the school staff believed & supported his mother & absorbed the frustration she sometimes needed to vent. For her it made an extremely tough situation bearable.
ReplyDeleteThank you
ReplyDeleteEverywhere you turn to try and get help with a child with ASD there is always a 'helpful' healthcare professional trying to point a finger of blame at the parent. My middle child suffered this through their early years at school, without formal diagnosis schools, social services, everybody trying to examine the situation at home under a microscope, looking for any excuse to blame the parents. It's demoralising and counter-productive as the parents end up feeling more stressed than they were to start with, yet still the accusations and the platitudes of unnecessary parenting courses which don't help with a child with ASD!
ReplyDeleteTHANK YOU. Thank you for 'seeing' us, thank you for believing us and thank you for speaking up for us.
ReplyDeletethank you!
ReplyDeleteSo so very true most teachers haven't a clue what to look for let alone notice until to late. Most children will show eventually but damage is done like in my child's case but now in specialist school down side was the horrendous consequences and the affect it had on my child's mental health was very damaging and family life was difficult x
ReplyDeleteYeah! That is completly tru! We had that experience day after day in more than half a year and it was so hurting for our child and for us in the family.
ReplyDeletewow that sounds just like my daughter and no one believes me
ReplyDeleteI can so relate its unreal. i feel im the bad parent, because i don't shout or have the fear their father does,the one who tries to please tries to show how much they r loved who pushes her own physical and mental health to the brink and more, who feels so guilty for wanting and needing space, who needs the hug to say u can do this u got this so much ur doing a great job, to then have my child knock me dwn again, but so upset by me wanting to meet a friend for coffee that's been postponed so many times.To have my child/den shout back say nasty hurtful things its soul destroying but u pick urself up and carry on banging ur head against the wall, because ur just paranoid ur just too like each other. To feel so alone & worthless
ReplyDeleteI have had this problem with one of my sons for years. Where do you turn to? I referred him to cahms.They refused to give a diagnosis for him and discharged him from the service. After waiting nearly 26 months it all came to nothing. Is there any help in the Coventry area?
ReplyDeleteI have had this problem with one of my sons for years. Where do you turn to? I referred him to cahms.They refused to give a diagnosis for him and discharged him from the service. After waiting nearly 26 months it all came to nothing. Is there any help in the Coventry area?
ReplyDeleteOMG this is so my lb he is getting the help though but school there is no issue but as soon he walks in though the front door wow we have a huge melt down and war on our hand as if he has been brewing all day and he can no longer hold it in feel so sorry for him as he is so sorry afterwards but he just can't help it after reading this it has helped me think it's not me as a parent causing as I have always questioned is it me that is doing something wrong but I now know it is not I do everything to help him deal with it the best I can
ReplyDeleteAgree 100%.
ReplyDeleteAs a parent I can see the look of disbelief and disinterest when explaining this,it's just awful.
More education required.
Education system is flawed.
My son will take years to get over the trauma caused by the system,that's if he ever does.
I have never come across an autistic person who has NO anger.
The system needs to change
I have never come across a human being that has 'no anger'. Autistics do not have meltdowns through anger! Meltdowns are a state of overwhelmedness. https://planetautismblog.wordpress.com/2014/02/06/what-does-a-meltdown-feel-like/
DeleteI totally agree! I had many years of this - not being taken seriously is depressing. They would say "if only you could see him at school - he is happy.." or "he needs to know his boundaries at home too". I would often only find out days (or even weeks) later the real reason for meltdowns at home when my son chose to finally share the information. It was nearly always something that had happened (or failed to happen!) at school.
ReplyDeleteNice blog post
ReplyDeleteI was turned away from my child's school when expressing my concerns. I too was faced with many of the experiences mentioned in the article with my child when she returned home from school. The school nurse talked to my child. Further to this the best they could do was advise me to go attend a "good parenting" group. I was embarrassed and disgusted with the response feeling like I was to blame since my child had never displayed any negative behaviours in school. Fortunately, I work with autistic children in the main stream setting and I was able to bring onboard strategies I use in school at home. This has helped her to manage the coke bottle effect in a more positive and safe way and me to respect and understand the pressure she has endured on a daily basis to conform with her every breathe through the school day. Children have so many expectations placed on them at such a young age, I don't blame them wanting to scream from the roof tops as a release.
ReplyDeleteThis is my daughter!
ReplyDeleteThank you. You have described exactly what situation I have with my 10 year old. He has massive anxiety issues but because school don't see it they don't really believe me. I guess I can see where they are coming from - you cannot help what you don't see, but, as a parent, where do you start? My son can speak. Communicate about sophisticated feelings ... maybe not.
ReplyDeleteSaw CAMHS this morning after being fobbed off for a year. Was not worth the wait as told we are on our own. Told us he is just anxious and we might be contributing but it is way beyond that and nobody cares...
ReplyDeleteIm so sorry to hear. Its something I hear alot and its so very sad
DeleteThank God there are some people who believe us. My son is amazing at masking, tho he will manipulate school to fit around him, he has been out of school for almost 6months now due to refusal. He has recently been diagnosed with asd with demand avoidance profile. Not that it seems to count for anything in support. Wish there were more like you around. x
ReplyDeleteThank God there are some people who believe us. My son is amazing at masking, tho he will manipulate school to fit around him, he has been out of school for almost 6months now due to refusal. He has recently been diagnosed with asd with demand avoidance profile. Not that it seems to count for anything in support. Wish there were more like you around. x
ReplyDeleteThese are exactly the problems we have with my son. I have been battling for a year to get help. One worker in cahms is finally listening.
ReplyDelete2 of my daughters are like this. The first one was diagnosed as severely dyslexic 5 weeks before finishing college. I knew from the age of 2 there was something and I had been fobbed off by everyone including CAHMS and schools because she was fine, her school work was ok, I was even told it was me and my parenting even though my other two children were OK. Oh and I was told if there was anything it was because she was a middle child and she was just pushing me!
ReplyDeleteI'm currently dealing with my third daughters panic attacks, again school think it's me and when I asked for help they sent me some phone numbers saying they hope I find what I'm looking for!!! I can't afford private testing at £700+ per test to find the root cause and I'm not bothering with CAMHS or GPs again.
My 6yr old son has similar difficulties. He has had trauma through loss from family bereavement and parental separation and he has terrible anxiety. I was also referred for a parenting skills group by CAMHs. He has a front to mask the anxiety and can be loud and appears confident so his school don't take my views on board that the anxiety is the real problem. He has been going to a local charity where he has equine therapy with ponies and this is helping him to express himself better. It is easy for professionals to blame the parent as it saves them from having to consider any changes in their approach. Thanks for your article. I find it reassuring. Alison
ReplyDeleteWe're just about to start the equine therapy with our 4 children. They all have different issues and we are yet to get any diagnosis but it will be interesting to see how this helps
DeleteYou left the 'l' out of the word complete (so it says compete) in your header.
ReplyDeleteThank you so much for writing this article. I am a 40 year old woman who WAS the child that kept quiet at school. Smiling all the time whilst inside struggling to comprehend the madness around me in the school system. I am going to keep following your blog as your insight is very useful for the direction my life is now heading.
ReplyDeletethe looper
ReplyDeleteCompletely refute what the parent is saying, even if they have the scratches and bruises to confirm it.eddie sergey
ReplyDelete