Autism, Cahms, anywhere else?
Discussion
orbit123 said:
7 weeks ago she went to an 3 night school camp and really struggled on night 1 then had to come home she was so upset the next day. It feels like it's been a trigger for lots of stored up emotions to come out (from a girl that very rarely cried) and she's been struggling since then. The more I read on masking I feel like it's possible she’s been doing that for months or longer and struggling with extra school and friendship responsibilities and complexities that come with being a pre-teen. I can imagine if true this has been mentally exhausting and the gates just opened. The transition to secondary school is incredibly worrying for her too and she can't stop thinking about how she'll cope, I think the camp has given a taster of what a much busier school environment will be like as well as having to get to class etc. A lot of the worries she will be totally fine with and it's the fear of the unknown vs the reality of her capability. We're seeing start of school refusal and major separation anxiety and I'm worried about how best to support. The pace with which it's come to the surface has really caught us off guard.
I think you've hit the nail on the head there. Its pretty much a given that the transition from Primary to secondary brings out the issues that were always there. From 'childish' to more adult nuanced behaviours, need for more complex masking, puberty, bigger and noisier, less predictable, fear of the unknown etc. You are doing the right thing in getting help, the only other route would be a private diagnosis, which can typically cost £1500-£2000. This might be marginally quicker than thru insurance. TBH I've not heard insurance cover autism diagnosis, so you are lucky.
This is an interesting and well timed thread for me. I would really love to know what your daughters were like when they were younger? My 7 year old has very similar traits to what is being described, and has done since she was younger. I would also be interested to know if your daughters had/have any issues with food? It’s a real battle getting our daughter to eat properly (she doesn’t eat out of choice, rather than being fussy) and when she doesn’t eat she is really hard work. We think it’s a control thing but are struggling to find a solution.
J.R.B. said:
This is an interesting and well timed thread for me. I would really love to know what your daughters were like when they were younger? My 7 year old has very similar traits to what is being described, and has done since she was younger. I would also be interested to know if your daughters had/have any issues with food? It’s a real battle getting our daughter to eat properly (she doesn’t eat out of choice, rather than being fussy) and when she doesn’t eat she is really hard work. We think it’s a control thing but are struggling to find a solution.
Our daughter has always eaten well, often eating adult portions if she had been super active that day and we were out for dinner - shes 11 now and tall. If she hasn't eaten she can be difficult and irritable - nothing too unusual but noticeable.Since the anxiety has really increased by a leap she's having a nervous stomach quite often. Feels like what I'm sure we've all had in brief spells in life before a big event - but more frequently. I think in our case it's the constant dread of change coming with puberty and school etc. + actual changes with hormones etc.
orbit123 said:
Came to health forum today to post up and see if anyone could help me help my daughter and found this thread!
My 11 year old daughter has always had what I believe are "spectrum" type attributes as do I. She's mostly loved primary school though and until 7 weeks ago the last 2 years of primary school have been her most enjoyable if anything with active roles in many areas of school life. She’s always struggled with anxiety but I wouldn't say it ever really impacted life to a problematic level.
I guess probably mild form of ASD the more I learn - can cope with but doesn't like noise, busy places, change, cheats, clubs, play dates. Does love animals, nature, art, rules, home, quiet etc. In many areas attributes we probably need more of in the world.
7 weeks ago she went to an 3 night school camp and really struggled on night 1 then had to come home she was so upset the next day. It feels like it's been a trigger for lots of stored up emotions to come out (from a girl that very rarely cried) and she's been struggling since then. The more I read on masking I feel like it's possible she’s been doing that for months or longer and struggling with extra school and friendship responsibilities and complexities that come with being a pre-teen. I can imagine if true this has been mentally exhausting and the gates just opened. The transition to secondary school is incredibly worrying for her too and she can't stop thinking about how she'll cope, I think the camp has given a taster of what a much busier school environment will be like as well as having to get to class etc. A lot of the worries she will be totally fine with and it's the fear of the unknown vs the reality of her capability. We're seeing start of school refusal and major separation anxiety and I'm worried about how best to support. The pace with which it's come to the surface has really caught us off guard.
Our primary school has been great and started CAMHS route long ago for more basic support - but it sounds like CAMHS is completely reactive to the worst cases and even then as others have said it’s perhaps not brilliant.
We have private health care and I started that route too when it all kicked off - after 3 weeks they said they are overloaded with child cases and would be delays etc. It didn't feel great and pretty disappointing. I’ve found a local (private) child psychologist and my wife and I met her this week with plan for our daughter to meet with her next week and see where we go from there.
At present we're managing to get her into school building (just), though she is spending more and more time out of class and with support assistants. The difficulty getting her into school building feels harder each day and I can see a vicious circle forming - the less contact with friends, her subjects and that routine the less she wants to go to class. The less she goes into class the less she wants to even go into the building. In many ways the solutions are making it worse. Personally I don't want her to change very much or feel like she needs to - but I remember secondary school and know we need to help her navigate it.
Good luck to everyone and sorry I don’t have much in way of solutions. I’ve found a lot of the above posts incredibly helpful though and will share anything useful I find.
I'm interested in your view on what attributes we need more of in this world. In my experience, most young adults are very inward focused and fit your description well. They always loved blocking people out at the office by plugging in their earphones and headphones. And they always leave for home real quick as they appeared anxious with taking transport during peak times. I wanted to ask if you and your wife are home people and enjoy quiet? I have a friend who is autistic and married a woman with strong issues related to autism. Both are undiagnosed, but they are extreme home people with fairly extreme protective approaches to parenting. I'm wondering if a normal child will mould into the same type of behaviour, or is it genetics - i.e. having autism - that drives this? My 11 year old daughter has always had what I believe are "spectrum" type attributes as do I. She's mostly loved primary school though and until 7 weeks ago the last 2 years of primary school have been her most enjoyable if anything with active roles in many areas of school life. She’s always struggled with anxiety but I wouldn't say it ever really impacted life to a problematic level.
I guess probably mild form of ASD the more I learn - can cope with but doesn't like noise, busy places, change, cheats, clubs, play dates. Does love animals, nature, art, rules, home, quiet etc. In many areas attributes we probably need more of in the world.
7 weeks ago she went to an 3 night school camp and really struggled on night 1 then had to come home she was so upset the next day. It feels like it's been a trigger for lots of stored up emotions to come out (from a girl that very rarely cried) and she's been struggling since then. The more I read on masking I feel like it's possible she’s been doing that for months or longer and struggling with extra school and friendship responsibilities and complexities that come with being a pre-teen. I can imagine if true this has been mentally exhausting and the gates just opened. The transition to secondary school is incredibly worrying for her too and she can't stop thinking about how she'll cope, I think the camp has given a taster of what a much busier school environment will be like as well as having to get to class etc. A lot of the worries she will be totally fine with and it's the fear of the unknown vs the reality of her capability. We're seeing start of school refusal and major separation anxiety and I'm worried about how best to support. The pace with which it's come to the surface has really caught us off guard.
Our primary school has been great and started CAMHS route long ago for more basic support - but it sounds like CAMHS is completely reactive to the worst cases and even then as others have said it’s perhaps not brilliant.
We have private health care and I started that route too when it all kicked off - after 3 weeks they said they are overloaded with child cases and would be delays etc. It didn't feel great and pretty disappointing. I’ve found a local (private) child psychologist and my wife and I met her this week with plan for our daughter to meet with her next week and see where we go from there.
At present we're managing to get her into school building (just), though she is spending more and more time out of class and with support assistants. The difficulty getting her into school building feels harder each day and I can see a vicious circle forming - the less contact with friends, her subjects and that routine the less she wants to go to class. The less she goes into class the less she wants to even go into the building. In many ways the solutions are making it worse. Personally I don't want her to change very much or feel like she needs to - but I remember secondary school and know we need to help her navigate it.
Good luck to everyone and sorry I don’t have much in way of solutions. I’ve found a lot of the above posts incredibly helpful though and will share anything useful I find.
GilletteFan said:
I'm interested in your view on what attributes we need more of in this world. In my experience, most young adults are very inward focused and fit your description well. They always loved blocking people out at the office by plugging in their earphones and headphones. And they always leave for home real quick as they appeared anxious with taking transport during peak times. I wanted to ask if you and your wife are home people and enjoy quiet? I have a friend who is autistic and married a woman with strong issues related to autism. Both are undiagnosed, but they are extreme home people with fairly extreme protective approaches to parenting. I'm wondering if a normal child will mould into the same type of behaviour, or is it genetics - i.e. having autism - that drives this?
It’s extremely likely that a child of two autistic people would be autistic. It’s considered likely that there is a strong genetic component to autism. Autism is not caused by parenting style or by emotional deprivation. To me your posts read a little like they’re written by someone who likes people and social interaction and thinks that everybody else would/should too. That could be way off, and i hope it’s not offensive.
I’d suggest you could read the book ‘Quiet’ by Susan Cain to get an idea of an introverts perspective.
Edited by GiantCardboardPlato on Saturday 29th April 06:45
My goodness everyone, what difficult things your daughters are dealing with.
This thread makes me angry - angry that so many young people are facing so much distress and tiredness and anxiety from having to work so hard to fit in, to meet other people’s expectations, to behave in the way that ‘you’re supposed to’, to accept and be part of systems that actively make things harder for them. I know from experience how tiring those things are.
It’s also amazing that they all have you on their side.
It’s so distressing because you just have to imagine what people - autistic ones, yes, but in reality all of us - would be capable of if they could put all our energy into the activity itself, and not have to use so much of it for masking, for fitting in, to hold it together during the day. So much is frittered away in distress and despair because of the expectations of other people.
Society needs to change and its needs to change to accept that different people are different, do the same things in different ways, and do different things. It’s ok, it’s fine, we’re all different. We learn in different ways, speak in different ways, see or think about things differently, stop resisting it. Accept it. It’s schools/society that are causing the issues here, not autistic people.
You are all doing a great job.
This thread makes me angry - angry that so many young people are facing so much distress and tiredness and anxiety from having to work so hard to fit in, to meet other people’s expectations, to behave in the way that ‘you’re supposed to’, to accept and be part of systems that actively make things harder for them. I know from experience how tiring those things are.
It’s also amazing that they all have you on their side.
It’s so distressing because you just have to imagine what people - autistic ones, yes, but in reality all of us - would be capable of if they could put all our energy into the activity itself, and not have to use so much of it for masking, for fitting in, to hold it together during the day. So much is frittered away in distress and despair because of the expectations of other people.
Society needs to change and its needs to change to accept that different people are different, do the same things in different ways, and do different things. It’s ok, it’s fine, we’re all different. We learn in different ways, speak in different ways, see or think about things differently, stop resisting it. Accept it. It’s schools/society that are causing the issues here, not autistic people.
You are all doing a great job.
I have autism (undiagnosed) and adhd diagnosed.
I would describe myself as a ball of energy and a nightmare.
My 13yr old (undiagnosed) is controlled by a combination of boxing (proper old school Irish club), judo and cycling.
And having to put up with me.
Try exercise. At first it might be resisted. Use bribes. You might find one that helps?
I would describe myself as a ball of energy and a nightmare.
My 13yr old (undiagnosed) is controlled by a combination of boxing (proper old school Irish club), judo and cycling.
And having to put up with me.
Try exercise. At first it might be resisted. Use bribes. You might find one that helps?
GiantCardboardPlato said:
It’s extremely likely that a child of two autistic people would be autistic. It’s considered likely that there is a strong genetic component to autism. Autism is not caused by parenting style or by emotional deprivation.
To me your posts read a little like they’re written by someone who likes people and social interaction and thinks that everybody else would/should too. That could be way off, and i hope it’s not offensive.
I’d suggest you could read the book ‘Quiet’ by Susan Cain to get an idea of an introverts perspective.
You are not wrong. I'm can flirt between social + outgoing and stay at home and focus. Relationships have always been good for me. I'm just concerned for my friend as he's basically a male provider (door mat) and his wife has several mental issues (red flags IMO). She is his first relationship and he married her and had kids. Basically he is a whipping boy. Could he have done better? Probably not. Is staying single for his whole life better? Probably not. Is not getting married and having kids with his wife better? You bet your arse! This is my angle. So now he has kids and a mentally ill wife, what can he do to minimise the damage done to his kids? I guess you will ask if it is damage. It seems that based on most of the posts, people are either trying to manage autism (self or others) or accepting autism. I'm on the managing side since my friend is in for the long haul as a door mate with no life. To me your posts read a little like they’re written by someone who likes people and social interaction and thinks that everybody else would/should too. That could be way off, and i hope it’s not offensive.
I’d suggest you could read the book ‘Quiet’ by Susan Cain to get an idea of an introverts perspective.
Edited by GiantCardboardPlato on Saturday 29th April 06:45
GiantCardboardPlato said:
My goodness everyone, what difficult things your daughters are dealing with.
This thread makes me angry - angry that so many young people are facing so much distress and tiredness and anxiety from having to work so hard to fit in, to meet other people’s expectations, to behave in the way that ‘you’re supposed to’, to accept and be part of systems that actively make things harder for them. I know from experience how tiring those things are.
This is a good summary of part of my frustration. Children and people are all different and unless an attribute is actually harmful to the individual or society I dislike that so much pressure is placed on suppressing to fit in. Social media seems to have made is all worse for kids than my own generation with every possible social error photographed and catalogued forever.This thread makes me angry - angry that so many young people are facing so much distress and tiredness and anxiety from having to work so hard to fit in, to meet other people’s expectations, to behave in the way that ‘you’re supposed to’, to accept and be part of systems that actively make things harder for them. I know from experience how tiring those things are.
A quiet, thoughtful person should be an asset to a school/team/business/org. I do think change is afoot though in some large businesses and in general it seems more ok to be a bit "weird" than 30 years ago.
Taking an extreme example in public life, some of the leaders I admire most are introverts (probably on spectrum somewhere). They're often not perfectly mass media friendly and I get impression they've had to work harder to be heard or progress. Facts are now optional etc. It's not a career path I'd choose or steer my kids into as the skills that allow progress seem so far removed from what I think is actually needed to do a good job. With plenty other options, it's easier to pick another path.
Perhaps we'll miss many great leaders in the future.
We’ve just had five days of school with a bug. It seems to have coincided with some little turd being horrid to my daughter. She’s really got under her skin and she’s being pushed around. Sitting at a table of four kids and eating lunch, only to be forced to move to a table on her own so another girl could sit down in her place. Nobody from the group went with her and she told me she was sitting there just listening to them laugh and joke and then walk off , leaving her behind without even a glance. My lass spends most of the days outside classes or in the bathroom texting me, crying or holding in the tears. My heart breaks. I spent all last night awake trying to figure out how to help her, what i can do. There will always be girls that behave like this and gain enjoyment from excluding and pushing around. She wants to stand up to her but is scared, the retaliation will be rumours spread about her and boys. They know she finds the idea repulsive and so she will do whatever to avoid this.
I’ve rung school, only for noone to ring back. Standard. Although I’m not sure what they can do to help really. I’m just trying to not go wring the little witch’s neck.
Orbit123, I feel for your daughter and yourself. The fact you recognise it and can help is fab. The next school will need a good handover but it’s a good time to start afresh with new ideas from the senco.
J.R.B, food. Yep. Beige, bland, tomato sauce with everything, texture. Usually it’s a case of sensory processing disorder and the differences in food stuffs is too much for them. Hence why a bland diet of stuff that is always the same is what they go for, like chicken nuggets, pizza etc. If you get a diagnosis then you can go for food clinic help, although it might make them hyper aware of whatever they touch. Does she eat ok if she goes to a friend’s house or a grandparent? Is there a meal she will always eat without fail?
I’ve rung school, only for noone to ring back. Standard. Although I’m not sure what they can do to help really. I’m just trying to not go wring the little witch’s neck.
Orbit123, I feel for your daughter and yourself. The fact you recognise it and can help is fab. The next school will need a good handover but it’s a good time to start afresh with new ideas from the senco.
J.R.B, food. Yep. Beige, bland, tomato sauce with everything, texture. Usually it’s a case of sensory processing disorder and the differences in food stuffs is too much for them. Hence why a bland diet of stuff that is always the same is what they go for, like chicken nuggets, pizza etc. If you get a diagnosis then you can go for food clinic help, although it might make them hyper aware of whatever they touch. Does she eat ok if she goes to a friend’s house or a grandparent? Is there a meal she will always eat without fail?
Bullybutt said:
I’ve rung school, only for noone to ring back. Standard.
Thanks for note and hope everyone doing ok.We had a transition meeting with secondary school this week for my daughter. It was arranged to be at the primary school (who have been incredible with support) with representatives from secondary school and also council health support. The secondary school representatives didn't turn up, no-one clear why yet but just seems to have fallen through cracks. This is on back of a few other smaller muddles. I get impression a lot of the support just falling to pieces under the strain.
I know tough to solve but I think my daughter (at present) needs quite limited support and we can hopefully keep things ok with our time and help from private psychologist. We need some help though (I won't be at the secondary school) and without that she'll need lots more help later which will put them under more pressure.
orbit123 said:
Bullybutt said:
I’ve rung school, only for noone to ring back. Standard.
Thanks for note and hope everyone doing ok.We had a transition meeting with secondary school this week for my daughter. It was arranged to be at the primary school (who have been incredible with support) with representatives from secondary school and also council health support. The secondary school representatives didn't turn up, no-one clear why yet but just seems to have fallen through cracks. This is on back of a few other smaller muddles. I get impression a lot of the support just falling to pieces under the strain.
I know tough to solve but I think my daughter (at present) needs quite limited support and we can hopefully keep things ok with our time and help from private psychologist. We need some help though (I won't be at the secondary school) and without that she'll need lots more help later which will put them under more pressure.
Half the problem is secondary education is a sausage factory and they don't really have the time and inclination to deal with anything that doesnt fit the norm, yes there are pockets of excellence, but generally its not great. They are measured on lats of things e.g. If getting them to school in the first place is a problem it reflects on the schools attendance stats. The school couldnt have been happier when we took our daughter out for 2 years, presumably cos it was one less thing to worry about and they could concentrate on turning out the sausages.
Almost a year on, I was wondering how others are getting on?
Been a 12 month intense learning course for me into school avoidance, neurodiversity and a seriously broken education and health system.
My daughter is still waiting on CAMHS. We've managed to get some private support (retired CAMHS doctor). Where I am the CAMHS waiting list has sort of been moved to paediatric now. So CAMHS list is now short (positive headline) but paediatric one is 2 years.
Found a lot of help from other parents. Common thread is, do what you can yourself, don't fight the system as they don't help and it saps energy.
School say a lot of good things and I genuinely believe want to be more proactive but then fail to deliver on any plan as someone is off or quits. It's hard to complain as the lead teacher at the school is the only consistent person she's had.
She is in most days for a period of time and I suppose its building her resilience in understanding DIY Britain! Really proud of her but at same time incredibly sad to see how little support has been available for children. I feel like we're lucky as we've had the time and money to support in other ways.
When I first started reading there were lots of stories and surveys about 1 in 5 kids avoiding secondary school. It's now up to 1 in 3.
Even putting aside emotions, I can't understand why there isn't more concern about how the nation will deal with productivity impact and long term mental health impact.
Hope all doing ok.
Been a 12 month intense learning course for me into school avoidance, neurodiversity and a seriously broken education and health system.
My daughter is still waiting on CAMHS. We've managed to get some private support (retired CAMHS doctor). Where I am the CAMHS waiting list has sort of been moved to paediatric now. So CAMHS list is now short (positive headline) but paediatric one is 2 years.
Found a lot of help from other parents. Common thread is, do what you can yourself, don't fight the system as they don't help and it saps energy.
School say a lot of good things and I genuinely believe want to be more proactive but then fail to deliver on any plan as someone is off or quits. It's hard to complain as the lead teacher at the school is the only consistent person she's had.
She is in most days for a period of time and I suppose its building her resilience in understanding DIY Britain! Really proud of her but at same time incredibly sad to see how little support has been available for children. I feel like we're lucky as we've had the time and money to support in other ways.
When I first started reading there were lots of stories and surveys about 1 in 5 kids avoiding secondary school. It's now up to 1 in 3.
Even putting aside emotions, I can't understand why there isn't more concern about how the nation will deal with productivity impact and long term mental health impact.
Hope all doing ok.
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