Autism, Cahms, anywhere else?
Discussion
Man, what bleak rollercoaster of emotions this thread paints of the situation.
Sad to see that it is not better than than, and in fact that if anything else it seems worse now than it was when I went through high school twenty years ago.
Now 37 and struggling with anxiety, depression, and a chronic inability to understand my own emotions let alone those of others if anything I probably count myself as one of the lucky ones, with support from my parents (who I am currently not talking to because mum makes an awful mother in law) I managed to not only get on but complete a degree in mechanical engineering and have held down a series of professional jobs since, all be it with plenty of challenges and complications along the way. Much of which sadly echo the same problems seen in school, a lack of understanding of different peoples skills, weaknesses, needs and personality, and that's within an engineer environment where nearly half of us are at least somewhere on the spectrum!
Why am I reading this, a mixture of morbid curiosity as to how its being managed now, and because I have a 2.5yo daughter who is amazing but will have to go through school herself in due course.
Why am I replying to this, I dont really know. Because I sort of feel I cant not, and because I hope that maybe it helps give some support and hope that you can be autistic and it turn out ok even in the current world. I dont know. But fair play and all the best to anyone muddling through it all!
Sad to see that it is not better than than, and in fact that if anything else it seems worse now than it was when I went through high school twenty years ago.
Now 37 and struggling with anxiety, depression, and a chronic inability to understand my own emotions let alone those of others if anything I probably count myself as one of the lucky ones, with support from my parents (who I am currently not talking to because mum makes an awful mother in law) I managed to not only get on but complete a degree in mechanical engineering and have held down a series of professional jobs since, all be it with plenty of challenges and complications along the way. Much of which sadly echo the same problems seen in school, a lack of understanding of different peoples skills, weaknesses, needs and personality, and that's within an engineer environment where nearly half of us are at least somewhere on the spectrum!
Why am I reading this, a mixture of morbid curiosity as to how its being managed now, and because I have a 2.5yo daughter who is amazing but will have to go through school herself in due course.
Why am I replying to this, I dont really know. Because I sort of feel I cant not, and because I hope that maybe it helps give some support and hope that you can be autistic and it turn out ok even in the current world. I dont know. But fair play and all the best to anyone muddling through it all!
Our daughter going by the quite difficult situations some of my fellow PHers find themselves in is very borderline we have anxiety issues constant issues around friends and socializing it's like that part of life is a foreign language she finds it very frustrating. Some smaller stuff has been mentioned such as an aversion to textures of certain foods mainly meat and push back against charges to routine. Hygiene not an issue with her.
She's always been good with eye contact though not sure if that's this famous female masking thing but I have a good friend (male )who's on the spectrum that avoids eye contact.
We're told 18 months for a "diagnosis" but I'm really not wanting to chase a label for her. To us she's quirky and a bit quiet with people sure but she's bright as a button and funny hopefully we'll overcome these curve balls in time we just want to see her happy I think she just needs a bit of additional help. Hopefully if she does need the backup in the education system it will be in place ready for A levels....
She's always been good with eye contact though not sure if that's this famous female masking thing but I have a good friend (male )who's on the spectrum that avoids eye contact.
We're told 18 months for a "diagnosis" but I'm really not wanting to chase a label for her. To us she's quirky and a bit quiet with people sure but she's bright as a button and funny hopefully we'll overcome these curve balls in time we just want to see her happy I think she just needs a bit of additional help. Hopefully if she does need the backup in the education system it will be in place ready for A levels....
fridaypassion said:
Our daughter going by the quite difficult situations some of my fellow PHers find themselves in is very borderline we have anxiety issues constant issues around friends and socializing it's like that part of life is a foreign language she finds it very frustrating. Some smaller stuff has been mentioned such as an aversion to textures of certain foods mainly meat and push back against charges to routine. Hygiene not an issue with her.
She's always been good with eye contact though not sure if that's this famous female masking thing but I have a good friend (male )who's on the spectrum that avoids eye contact.
We're told 18 months for a "diagnosis" but I'm really not wanting to chase a label for her. To us she's quirky and a bit quiet with people sure but she's bright as a button and funny hopefully we'll overcome these curve balls in time we just want to see her happy I think she just needs a bit of additional help. Hopefully if she does need the backup in the education system it will be in place ready for A levels....
How old is she? Don't worry about labels, you can choose to use it or not. She's always been good with eye contact though not sure if that's this famous female masking thing but I have a good friend (male )who's on the spectrum that avoids eye contact.
We're told 18 months for a "diagnosis" but I'm really not wanting to chase a label for her. To us she's quirky and a bit quiet with people sure but she's bright as a button and funny hopefully we'll overcome these curve balls in time we just want to see her happy I think she just needs a bit of additional help. Hopefully if she does need the backup in the education system it will be in place ready for A levels....
But the label helps explain things, and it helps when it comes to reasonable adjustments, if required. By the time she needs them, it will be too late to get a diagnosis.
sparkyhx said:
How old is she? Don't worry about labels, you can choose to use it or not.
But the label helps explain things, and it helps when it comes to reasonable adjustments, if required. By the time she needs them, it will be too late to get a diagnosis.
I would agree with that.But the label helps explain things, and it helps when it comes to reasonable adjustments, if required. By the time she needs them, it will be too late to get a diagnosis.
Managed to muddle through my GSCEs within specific help just about, all be it in residential special needs school with small class sizes, and a lot of support from my parents. A, 6x Bs , C, D, E. The latter two in English. In primary I had access to a 1:1 teaching assistant a reasonable amount of the time.
However I did then need 1:1 tutoring to resit my English GSCE at the start of my A-levels, and it very quickly became obvious that people really struggled to read my writing, and it was slow to get my thoughts down on paper with a pen, so I ended up with 25% extra time and use of a computer for exams, which I continued to make use of at uni throughout my engineering degree. This also meant a small exam room with just a few others, not 200 odd in a big hall which was nice, much less distraction.
I was fortunate enough to already have various bits of paperwork in place, parents who where willing to fund private ed psych diagnosis, and to be doing all of this just over 20 years ago, when demand was better matched to the available supply!
dhutch said:
Man, what bleak rollercoaster of emotions this thread paints of the situation.
Sad to see that it is not better than than, and in fact that if anything else it seems worse now than it was when I went through high school twenty years ago.
Now 37 and struggling with anxiety, depression, and a chronic inability to understand my own emotions let alone those of others if anything I probably count myself as one of the lucky ones, with support from my parents (who I am currently not talking to because mum makes an awful mother in law) I managed to not only get on but complete a degree in mechanical engineering and have held down a series of professional jobs since, all be it with plenty of challenges and complications along the way. Much of which sadly echo the same problems seen in school, a lack of understanding of different peoples skills, weaknesses, needs and personality, and that's within an engineer environment where nearly half of us are at least somewhere on the spectrum!
Why am I reading this, a mixture of morbid curiosity as to how its being managed now, and because I have a 2.5yo daughter who is amazing but will have to go through school herself in due course.
Why am I replying to this, I dont really know. Because I sort of feel I cant not, and because I hope that maybe it helps give some support and hope that you can be autistic and it turn out ok even in the current world. I dont know. But fair play and all the best to anyone muddling through it all!
A large part I found with my kids was finding out why they did as they did, both were very late to get a diagnosis so the schools were of no help as especially my daughter as with most girls she masked it so well only falling to pieces at home.Sad to see that it is not better than than, and in fact that if anything else it seems worse now than it was when I went through high school twenty years ago.
Now 37 and struggling with anxiety, depression, and a chronic inability to understand my own emotions let alone those of others if anything I probably count myself as one of the lucky ones, with support from my parents (who I am currently not talking to because mum makes an awful mother in law) I managed to not only get on but complete a degree in mechanical engineering and have held down a series of professional jobs since, all be it with plenty of challenges and complications along the way. Much of which sadly echo the same problems seen in school, a lack of understanding of different peoples skills, weaknesses, needs and personality, and that's within an engineer environment where nearly half of us are at least somewhere on the spectrum!
Why am I reading this, a mixture of morbid curiosity as to how its being managed now, and because I have a 2.5yo daughter who is amazing but will have to go through school herself in due course.
Why am I replying to this, I dont really know. Because I sort of feel I cant not, and because I hope that maybe it helps give some support and hope that you can be autistic and it turn out ok even in the current world. I dont know. But fair play and all the best to anyone muddling through it all!
My Grandson who is in Reception already has a diagnosis as we then recognised the signs in him and got the SEN of the school involved who are currently great. I say currently due to the way my kids were treated but my grandson is a long way from High School yet and we now know more of what to do to help him.
I'm dreading teenage years for my daughter and son in law though as they are tough even when you are not on the spectrum.
Hoping you guys might be able to help here as I'm struggling a bit! DD is on her Duke of Edinburgh at the moment and we have had a call from one of the organisers and our daughter is really struggling. She's been out on expedition today but has had a meltdown when it's come to getting settled into camp. She's with her school pals but she doesn't want to sleep in the tent! I think she is staying now but we've had an hour on and off on the phone with the (very understanding) expedition leader but is this an Autism thing? Could it be being out of routine? It's all new to me and I just want to try and understand whats going on hate thinking of her being upset! She look like she is staying now but she wanted to come home and abandon the whole thing and she's been working form months with volunteering (local food bank and church which has been no problem at all). Any input would be greatly appreciated.
fridaypassion said:
Hoping you guys might be able to help here as I'm struggling a bit! DD is on her Duke of Edinburgh at the moment and we have had a call from one of the organisers and our daughter is really struggling. She's been out on expedition today but has had a meltdown when it's come to getting settled into camp. She's with her school pals but she doesn't want to sleep in the tent! I think she is staying now but we've had an hour on and off on the phone with the (very understanding) expedition leader but is this an Autism thing? Could it be being out of routine? It's all new to me and I just want to try and understand whats going on hate thinking of her being upset! She look like she is staying now but she wanted to come home and abandon the whole thing and she's been working form months with volunteering (local food bank and church which has been no problem at all). Any input would be greatly appreciated.
I'm guessing she will be home now. Try to find out what happened, it could be a sensory thing/too many people around/noise/different feel to sleep bag/mattress - a whole number of reasons why she kicked off. Defiantly not your average teen thing and I would bet a symptom of Autism. I doubt she will even be able to vocalise the cause herself.solo2 said:
I'm guessing she will be home now. Try to find out what happened, it could be a sensory thing/too many people around/noise/different feel to sleep bag/mattress - a whole number of reasons why she kicked off. Defiantly not your average teen thing and I would bet a symptom of Autism. I doubt she will even be able to vocalise the cause herself.
Hey Solo thanks for taking the time to reply. She actually did stay the night and has pushed on and done her expedition today I'm so proud of her I could burst!! She is coming home early she should have been there tonight but the team leader advised she go back home. Funnily enough exactly what you just said there she wasn't able to vocalise what the exact issue was. She doesnt kick and scream she calls it "overwhelmed" and she gets upset and crys. It's absolutely sole destroying to see her upset but I'm just trying to understand. I know she definitely isn't "playing up" she's an absolutely lovely girl but she's really struggled with this! To be fair I never did the D of E I dont think I would have been into it myself at 14! fridaypassion said:
Hey Solo thanks for taking the time to reply. She actually did stay the night and has pushed on and done her expedition today I'm so proud of her I could burst!! She is coming home early she should have been there tonight but the team leader advised she go back home. Funnily enough exactly what you just said there she wasn't able to vocalise what the exact issue was. She doesnt kick and scream she calls it "overwhelmed" and she gets upset and crys. It's absolutely sole destroying to see her upset but I'm just trying to understand. I know she definitely isn't "playing up" she's an absolutely lovely girl but she's really struggled with this! To be fair I never did the D of E I dont think I would have been into it myself at 14!
How was she? It’s good she completed it, but at what cost! Meltdowns, or shutdown or need for a {timeout{ and decompress. She's actually been really good since she got back she slept in until 12.30 yesterday! She was absolutely shattered with she got back but she's telling all of her tales from the trip. We have managed to work out she had a real issue with the tent (camping isn't something she's really done before) she couldn't sleep. She did push on and came home one night early basically. But basically no issues with her when she's got home.
Fridaypassion, definitely because it’s a new place, sensory overload and her safe people aren’t there with her. We have this if we go on holiday, even if we go to a familiar place. She did utterly amazing to stay and push through that. Folk don’t realise how draining it is for the individual to cope with the emotions and being exhausted afterwards is normal and justified. The constant heightened state and emergency the brain and body feels can’t easily be described.
I always hope that once they’ve done the hard bit once they will find it easier next time but it’s not always the case. We are in a three session week, two hours at a time in school and she still is utterly panic stricken when I try and get her in. I’m looking at if I can get help with a tutor when at home but the info to wade through and where to get help is swamping me. I’d say roll on the summer holidays as I can switch that part of me off for a few weeks, but that’s not the attitude and I have to continue the fight and help. Swimming in treacle would be easier.
I always hope that once they’ve done the hard bit once they will find it easier next time but it’s not always the case. We are in a three session week, two hours at a time in school and she still is utterly panic stricken when I try and get her in. I’m looking at if I can get help with a tutor when at home but the info to wade through and where to get help is swamping me. I’d say roll on the summer holidays as I can switch that part of me off for a few weeks, but that’s not the attitude and I have to continue the fight and help. Swimming in treacle would be easier.
Glad she's doing well. My daughter came home a day early from an overnight residential course thing. It was such a huge achievement though.
She's changing schools to a small independent school after the summer. Trial days went really well so fingers crossed. She couldn't really describe what felt different there other than just the environment itself. It's not easy change for us but education at state school has been inaccessible. CAMHS has been something of a joke though we're finally on pathway for assessment after almost 2 years. We'll manage but now we have a school plan I see labour are going to add the VAT to the fees. In principle I get the idea there but it shouldn't happen until state schools are supported. If we didn't have enough funds to make difference we'd be in place where neither route possible. I presume where many people are.
I'm genuinely surprised that the state secondary school she's attended until now isn't further ahead of where we were when I was at school circa 30 years ago and I went to a fairly poor state school. In some ways we've move backwards now as so many teachers at her school are part time, flexi working etc. I presume a step to attract and retain vs just paying teachers properly and respecting the important of a teacher in society. It's ironic given the drive on attendance for children and struggles of many to attend school full time due to mental health issues.
One of psychologists we've worked thinks that as a society we've embraced children being individuals, thinking about the mental wellbeing and emotions but completely failed to adapt school environments very much at all. Schools (and the NHS) are still trapped back in time in a system that exists mainly because of logistics - only way 1 teacher can have a class of 30 kids is to use lots of routines and rules.
I don't have answers but failure to invest in supporting young people is going to be a terrible blunder for the UK IMO. It's very short sighted.
She's changing schools to a small independent school after the summer. Trial days went really well so fingers crossed. She couldn't really describe what felt different there other than just the environment itself. It's not easy change for us but education at state school has been inaccessible. CAMHS has been something of a joke though we're finally on pathway for assessment after almost 2 years. We'll manage but now we have a school plan I see labour are going to add the VAT to the fees. In principle I get the idea there but it shouldn't happen until state schools are supported. If we didn't have enough funds to make difference we'd be in place where neither route possible. I presume where many people are.
I'm genuinely surprised that the state secondary school she's attended until now isn't further ahead of where we were when I was at school circa 30 years ago and I went to a fairly poor state school. In some ways we've move backwards now as so many teachers at her school are part time, flexi working etc. I presume a step to attract and retain vs just paying teachers properly and respecting the important of a teacher in society. It's ironic given the drive on attendance for children and struggles of many to attend school full time due to mental health issues.
One of psychologists we've worked thinks that as a society we've embraced children being individuals, thinking about the mental wellbeing and emotions but completely failed to adapt school environments very much at all. Schools (and the NHS) are still trapped back in time in a system that exists mainly because of logistics - only way 1 teacher can have a class of 30 kids is to use lots of routines and rules.
I don't have answers but failure to invest in supporting young people is going to be a terrible blunder for the UK IMO. It's very short sighted.
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