The autism thread

[Robertj21a]

Can I just chip in as an interested bystander. Although I have no personal involvement with anyone with autism, it is still very helpful for others, like me, to better understand the issues. It is good to see an honest, open, discussion about the many practical problems that need to be overcome and I'm sure many of us have gained a much better insight into the issue as a whole.

[sparkyhx]

Robertj21a said:

Can I just chip in as an interested bystander. Although I have no personal involvement with anyone with autism, it is still very helpful for others, like me, to better understand the issues. It is good to see an honest, open, discussion about the many practical problems that need to be overcome and I'm sure many of us have gained a much better insight into the issue as a whole.

Thanks for this, just bear in mind most of this is 'hidden' from people, this is the side of autism (high functioning/aspergers) that people dont see. The mask/act is on most of the time and I have lost count of the times I have heard 'you seem fine I wouldnt have known', 'well he seems alright in school' etc etc. But despite what it looks like its not all bad news.

My daughter is setted in Uni in Falmouth, we've had a few wobbles but so far she has been good. She's had a first in every piece of work so far. Previously her attendance at secondary school was under 50% and her grades were not great even though she is highly intelligent

My son qualified as a primary teacher in Sept and has already been 'promoted' to subject lead, his feedback is tremendous and he's very happy. Last April he got married and is in the process of buying his first home. I also dont mention the times he has had us rolling around in stitches with his humour, or the times my daughter starts singing a song, that she should have no right to know, its like 'how the F do you even know that song, let alone know the words'. She can remember a song after just 1 or 2 hearings, it never ceases to astonish me. She also has us in stitches with her wry one liners.

Its not all bad news!

[sparkyhx]

gazza285 said:

Come home from work to an empty house, my son is up at A&E with the wife, waiting to the the mental health crisis team. I can see no end to this, and I worry about his future. I feel helpless right now.

Sorry to hear that, we've had many dealings with the Mental Health Crisis Team, both personally with my kids and myself and my wife with clients. They tend to only deal with suicide risk and they unfortunately know very little about Autism which is somewhat ironic cos Autistic people are 9x more likely to commit suicide than neurotypical people.

Once the immediate crisis is over they tend to refer to 'Insight' for counselling (Calderdale Kirklees are joint authority). Insight also know very little about autism, in fact they canned my sessions cos they felt they couldnt work with me and canned my daughters sessions cos she missed 2 due to anxiety levels.

Is your son on any medication? It can be useful to iron out the peaks and troughs, SRI Antidepressants are the usual, although Pregabalin (anti anxiety (amongst other things) has significantly helped me, much better than the SRI.

Someone I know's son, trashed his bedroom this week, and I mean properly trashed. A few months ago he had gone thru the house smashing pictures and cutting himself out of them. I cant imagine what that must feel like as a parent. We've had self harm, fists thru walls and doors over the years, in fact I'm sat here looking at a patched plasterboard wall and another dent in a wall and a damaged door. hey ho.

Edited by sparkyhx on Friday 17th January 12:36

Edited by sparkyhx on Friday 17th January 17:09

[gazza285]

We have a few holes in the walls needing repair.

The crisis team have contacted CAMHS, so hopefully we will bypass all the well meaning but ineffective departments that you are expected to use first, our past experience with these people have shown them to not be much use to my son.

He has been on Risperidone in the past, but is currently not taking anything.

He is settled today, no college until Monday, so he is less anxious. Dragging him out on a bike ride tomorrow, he hasn’t wanted to race since mid November, we are usually racing every weekend.

[sparkyhx]

Getting out will help his mood

Respiridone is an anti psychotic, was he diagnosed with bi-polar, a common misdiagnosis.
Ah, so he's under 18 hence camhs. camhs have asked about training for their people, so they even recognised their lack of expertise, but I assume that varys depending on team..

Edited by sparkyhx on Saturday 18th January 13:01

[sparkyhx]

gazza285 said:

Come home from work to an empty house, my son is up at A&E with the wife, waiting to the the mental health crisis team. I can see no end to this, and I worry about his future. I feel helpless right now.

Dont want to pry, just ignore me if you want, how is your son doing? I've been thinking about you both (your whole family actually) , I know what its like.

[gazza285]

I’ll reply later, it has been an infuriating week or two...

[sparkyhx]

gazza285 said:

I’ll reply later, it has been an infuriating week or two...

Infuriating I know well.................fortunately my wife was very good in pushing an agenda

[bexVN]

I need some advice. My head is an emotional mess this morning (for a few reasons including that I witnessed my sons so called friends deliberately run past our house instead of calling for him as they usually do today. He was ready and waiting for them. He was OK but confused when I said 'I think' I saw them and he also tried to think of reasons why they did.

I asked them at school (calmly!), one of them came up with a totally implausible but still well thought of excuse and then they continued to walk off without him etc.

My concern is these two had been til now reliable friends for him, it gave me some reassurance because I know due to his 'ways' he doesn't have many, this might be a temporary blip but if they have decided they don't want to be friends with him anymore it will upset him and cofuuse him as he will not know why but it will isolate him and I don't know what to do about that.

Should I discuss it with his teacher?

[sparkyhx]

bexVN said:

I need some advice. My head is an emotional mess this morning (for a few reasons including that I witnessed my sons so called friends deliberately run past our house instead of calling for him as they usually do today. He was ready and waiting for them. He was OK but confused when I said 'I think' I saw them and he also tried to think of reasons why they did.

I asked them at school (calmly!), one of them came up with a totally implausible but still well thought of excuse and then they continued to walk off without him etc.

My concern is these two had been til now reliable friends for him, it gave me some reassurance because I know due to his 'ways' he doesn't have many, this might be a temporary blip but if they have decided they don't want to be friends with him anymore it will upset him and cofuuse him as he will not know why but it will isolate him and I don't know what to do about that.

Should I discuss it with his teacher?

Short answer is YES, just ask them to keep an eye on things and his relationships, explain whats happened and possibly nip any issues in the bud. They can often help by directing any group work accordingly.

I assume he's diagnosed and this will add a certain gravitas to the request.
Is there a new friend in the group? or one 'leader' who could be pressuring the others to not be friends with the 'weird kid'.

How old is he? Primary?

Lets hope its temporary.

[bexVN]

Thank you.
Yes Primary.
Currently under assessment awaiting further referrals but everyone we have seen has said definitely on the spectrum (probably along Aspergers)
Hiss teacher is very aware so I will try and talk to her this afternoon.

[sparkyhx]

bexVN said:

Thank you.
Yes Primary.
Currently under assessment awaiting further referrals but everyone we have seen has said definitely on the spectrum (probably along Aspergers)
Hiss teacher is very aware so I will try and talk to her this afternoon.

I dont want to be a doom sayer, but you need to be thinking about transition to secondary school, thats when things tend to go pear shaped im afraid.

[bexVN]

sparkyhx said:

bexVN said:

Thank you.
Yes Primary.
Currently under assessment awaiting further referrals but everyone we have seen has said definitely on the spectrum (probably along Aspergers)
Hiss teacher is very aware so I will try and talk to her this afternoon.

I dont want to be a doom sayer, but you need to be thinking about transition to secondary school, thats when things tend to go pear shaped im afraid.

Already actioning it with primary school senco. She is arranging a meeting with his likely secondary school Senco., she thinks an early visit to the school with him and inc her will be useful to get an action plan in place for him. I am so conscious of how hard it could get in secondary school (personal experience not helping with that one)

His teacher wasn't in yesterday so I have arranged for her to give me a call either this evening or tomorrow.

I had a chat with him last night, it isn't great. Taking him to school this morning and he had no classmate he felt he could go to. He doesn't know what went wrong and he still considers them his friends but he knows they no longer do consider him a friend (it broke my heart watching him struggle to try and understand it and trying to be strong about it)

[sparkyhx]

bexVN said:

sparkyhx said:

bexVN said:

Thank you.
Yes Primary.
Currently under assessment awaiting further referrals but everyone we have seen has said definitely on the spectrum (probably along Aspergers)
Hiss teacher is very aware so I will try and talk to her this afternoon.

I dont want to be a doom sayer, but you need to be thinking about transition to secondary school, thats when things tend to go pear shaped im afraid.

Already actioning it with primary school senco. She is arranging a meeting with his likely secondary school Senco., she thinks an early visit to the school with him and inc her will be useful to get an action plan in place for him. I am so conscious of how hard it could get in secondary school (personal experience not helping with that one)

His teacher wasn't in yesterday so I have arranged for her to give me a call either this evening or tomorrow.

I had a chat with him last night, it isn't great. Taking him to school this morning and he had no classmate he felt he could go to. He doesn't know what went wrong and he still considers them his friends but he knows they no longer do consider him a friend (it broke my heart watching him struggle to try and understand it and trying to be strong about it)

Thats great about the senco, not so great about your son. I know how upsetting it can be to see your child like that. It might sort itself out primary kids chop and change friendships. Secondary schools can be a new start, new friends etc, fingers crossed.

secondary schools can be hit and miss with their support, the3y say the right things but when it comes to implementation they can be clueless.
My daughter went to two (3 if you count an internet school for 2 years). First one for a year and a bit before she was diagnosed. Problems at school then resulted in her being taken out of mainstream education and she then spent 2 years of internet school, then 2 years GCSE back at the first school. Attendance was down at 50% and she scraped thru GCSE's. The school were rubbish. They said all the right things on paper, but didnt really understand it in practice. The second school she is where she did her A levels, and they were brilliant totally, understood and got it.

The secondary school experience, and experience with Camhs, doctors, hospitals and the general shocking lack of understanding 'oh like rainman' (yes we've heard that several times) convinced us to start a Training programme, for Parents, Teachers, people on the spectrum both diagnosed, undiagnosed, medical professions, carers, council service providers etc. That branched out to 'training' councellors and Therapists in how to work with people on the spectrum (standard approaches tend not to work). We've had a number of GP's and even a couple of Consultant Psychiatrist on the training thru word of mouth. Lost count of the number of parents that come and suddenly realise they are also on the spectrum. On the last course we did the parent was a GP and is now seeking a diagnosis for themselves after a lightbulb moment.

Edited by sparkyhx on Thursday 30th January 12:22

[gazza285]

After the referal from the mental health crisis team at A&E to CAMHS we heard nothing. Expecting some form of contact the wife gave them a ring, to be told that he does not meet the criteria for them to help, and have referred him back to CHEWS, who have also not been in touch.

The wife rang CHEWS to be told that they have been looking at his case file, and after consulting with his SEN team at college, have decided that he is not having any real issues, and is just suffering from a low mood.

The college have confirmed that there has been no approach from either CAMHS or CHEWS.

CHEWS have now stated that he is on an eleven week waiting list for assessment, and then he might be put on a thirty seven week waiting list to be seen a therapist.

As an interim measure, they have suggested that he attends a help group. This comprises of ten to fifteen other adolescents who have a low mood, and a member of the CHEWS staff, and they are expected to talk about their issues. This completely ignores his very typical autistic trait of not being comfortable with either new environments, or people he doesn't know.

We have now taken my son to see a private therapist, and the change in his outlook and behaviour is obvious to see. Although not back in college full time, my son is now attending every day again, but he is only managing about a half of his lectures. Early days yet though, he has only seen this therapist twice, and that included the initial assessment.

[dhutch]

My partner works in NHS mental health, some of it is very good, with new services such as a pd hub and community crisis team. How much of if also sadly woefully inadequate with waiting times you can only be ashamed of. Sadly CAMHS was one of the worst areas she spent time in so far. I'm sure CAHMS is even worse for those with autisic traits and or disagnoses.

As which point I am glad you have been able make use of a private service, and that has worked and is working for your son.

Daniel

[sparkyhx]

gazza285 said:

After the referal from the mental health crisis team at A&E to CAMHS we heard nothing. Expecting some form of contact the wife gave them a ring, to be told that he does not meet the criteria for them to help, and have referred him back to CHEWS, who have also not been in touch.

Well there's a surprise

gazza285 said:

The wife rang CHEWS to be told that they have been looking at his case file, and after consulting with his SEN team at college, have decided that he is not having any real issues, and is just suffering from a low mood.

That's because he's masking all the time at college, idiots, they wont see things, do you not understand the basics?

gazza285 said:

The college have confirmed that there has been no approach from either CAMHS or CHEWS.

so who's telling the truth here?

gazza285 said:

CHEWS have now stated that he is on an eleven week waiting list for assessment, and then he might be put on a thirty seven week waiting list to be seen a therapist.

As an interim measure, they have suggested that he attends a help group. This comprises of ten to fifteen other adolescents who have a low mood, and a member of the CHEWS staff, and they are expected to talk about their issues. This completely ignores his very typical autistic trait of not being comfortable with either new environments, or people he doesn't know.

We have now taken my son to see a private therapist, and the change in his outlook and behaviour is obvious to see. Although not back in college full time, my son is now attending every day again, but he is only managing about a half of his lectures. Early days yet though, he has only seen this therapist twice, and that included the initial assessment.

dhutch said:

My partner works in NHS mental health, some of it is very good, with new services such as a pd hub and community crisis team. How much of if also sadly woefully inadequate with waiting times you can only be ashamed of. Sadly CAMHS was one of the worst areas she spent time in so far. I'm sure CAHMS is even worse for those with autisic traits and or disagnoses.

As which point I am glad you have been able make use of a private service, and that has worked and is working for your son.

Daniel

Unfortunately an all too familiar story. The group thing is laughable, as is the weight put on the college discussion, and just shows exactly what we've been talking about, they've read the bumf, but it means nothing to them in reality .

We are close to the CCG and this is now being escalated and recognised. I cant really say what's happening, but I doubt its going to happen quickly anyway, its just an uphill battle, but at least the CCG is now starting to recognise the issues faced.

Really its down to parents, which is fine if you can afford it. Failing that educate yourself and be prepared for a battle and a lot of frustration and hassling people. If you think getting help now is bad wait til he's 18, there is then pretty much ZERO.

p.s. out of interest who is he seeing? I might be someone we've trained and would be nice to know.

Edited by sparkyhx on Friday 31st January 11:36

[gazza285]

sparkyhx said:

Unfortunately an all too familiar story. The group thing is laughable, and just shows exactly what we've been talking about, they've read the bumf, but it means nothing to them in reality.

We are close to the CCG and this is now being escalated and recognised. I cant really say what's happening, but I doubt its going to happen quickly anyway, its just an uphill battle, but at least the CCG now starting to recognise the issue.

Really its down to parents, which is fine if you can afford it. Failing that educate yourself and be prepared for a battle and a lot of frustration and hassling people. If you think getting help now is bad wait til he's 18, there is then pretty much ZERO.

p.s. out of interest who is he seeing? I might be someone we've trained and would be nice to know.

He is seeing a psycotherapist called Martyn Magill.

[sparkyhx]

gazza285 said:

He is seeing a psycotherapist called Martyn Magill.

Not one we know, good luck with CBT, it can work, but often the rigidity of thinking and resistence to change of an autistic person can self sabotage.

All the best

[gazza285]

sparkyhx said:

gazza285 said:

He is seeing a psycotherapist called Martyn Magill.

Not one we know, good luck with CBT, it can work, but often the rigidity of thinking and resistence to change of an autistic person can self sabotage.

All the best

He has been very responsive to it in the past, and seems to be responding again, so we will continue down this path. The NHS is currently providing no viable alternative.