The autism thread

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wiggy001

Original Poster:

6,545 posts

272 months

Friday 6th December 2019
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I just wanted to add to my previous posts regarding the Cygnets course and say that, having completed the course (6 sessions, 3 hours each) we now feel better equipped to understand VIctoria, the causes of her meltdowns and the challenges she faces every day. It will take a while for what we've learned to sink in and become second-nature or routine for us, but it is definitely a massive step in the right direction.

If anyone here has children on the spectrum, especially if recently diagnosed, I cannot recommend this course enough. What I would say is choose the timing of the course carefully. It was coincidence of timing for us, but we started this course 9 months after getting the diagnosis. In 9 mines we have been through so many emotions (shock, sadness, grief, positivity, anger, frustration - you name it, we've been there!). At the time of starting the course we were in the mindset of "acceptance" and knowing we have to work out the best way of dealing with things for the sake of all of us. I strongly believe we wouldn't have got so much out of the course had we been in any other frame of mind.

MrJuice

3,392 posts

157 months

Friday 6th December 2019
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Thanks for this wiggy001

Also thanks for links to the courses

sparkyhx

4,156 posts

205 months

Friday 20th December 2019
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dhutch said:
I am not sure if there is a need list of potted problems and solutions, and certainly don't have one, however there are various options for others antidotes including this thread, articles on the 'top ten traits of xyz' of varying quality, and specific sites such as the 'wrongplanet' forums and books etc.

Having the confidence to take control of a social situation isnt easy especially typically our traits go hand in hand with reduced or misplaced social conference, but certainly if having awareness and or reasons for things you struggle with helps with saying 'shall we just stand over here' or 'can you give us five minutes' thats great.

I seem to be better than most (if worse than than average) at coping with louder background noise, but do really struggle with anything attention catching. If end up in a pub with a TV I often end up watching it rather than chatting with friends even if its on mute, and my partner (not formal diagnoses, but clearly with some traits and family with strong symptoms) who is a medic has to ask for the TV to be turned off if she is doing patient visits

I am also crap with caffeine and spend my life declining hot drinks or asking for decaf/hotchocolate, really struggle when people interrupting me (and also tend to talk over people), often need more clarification and or specific direction of what is actually expected of me.

Daniel
All that is very common issues, you can get counselling which would help, but MUST be from someone who understands and they are as rare as hens teeth. My wife who is a specialist autism counsellor and trainer and may know someone if you are interested. We are Halifax, so its a bit far for you.

sparkyhx

4,156 posts

205 months

Friday 20th December 2019
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Matt_N said:
Firstly, great thread. I’ve had a good read of it and thought about posting in here many times before.

For quite a while now I’ve thought I may be on the spectrum, I’ve done online tests and always score highly giving an indication that I am. My wife has done the same tests and always scores lowly.

I’ve recognised so many of the behaviours listed in this thread as that of my own and the realisation is coming over me that a) I’m probably somewhere on the scale and b) so is my 5 yr old son who shares a lot of my character traits.

I seem to specifically have issues with empathy and concern for others, as in I find it extremely difficult, almost impossible to emphasise with those that are going through the toughest of times, I am pretty much emotionless with such things and am sure people like badly of me for it.

I struggle with small talk and often cannot engage in conversation much past a few pleasantries, whether that is my inability or just lack of want to do so is difficult to tell. I don’t really enjoy small talk and get annoyed when people try and engage in inane pointless conversations for the sake of breaking the silence. Is that an indicator, not sure? I also find eye contact uncomfortable.

I can also be quite clumsy which I’ve read is an indicator, not big things but I pretty much always spill my tea if I’m walking with a cup, or will turn around and knock something over, or will clip my foot on a skirting board that type of thing. Lack of spatial awareness, clumsiness, who knows?

Moving away from a plan really unsettles me, if we decide to do something over the weekend and then my wife suggests we change and do something different on the day, I get anxious and often angry but cannot explain to her why.

Next steps I guess are to seek some formal advice and guidance but I am also very concerned that my son is displaying similar traits and want to ensure he has the appropriate support.

Bit of a waffle but I finally felt I needed to get something down and have probably missed loads!
Textbook list of 'symptoms'. The clumsyness is probably Dyspraxia and often co-morbid along with ADHD/ADD............and many other things but they are very common

sparkyhx

4,156 posts

205 months

Friday 20th December 2019
quotequote all
wiggy001 said:
I just wanted to add to my previous posts regarding the Cygnets course and say that, having completed the course (6 sessions, 3 hours each) we now feel better equipped to understand VIctoria, the causes of her meltdowns and the challenges she faces every day. It will take a while for what we've learned to sink in and become second-nature or routine for us, but it is definitely a massive step in the right direction.

If anyone here has children on the spectrum, especially if recently diagnosed, I cannot recommend this course enough. What I would say is choose the timing of the course carefully. It was coincidence of timing for us, but we started this course 9 months after getting the diagnosis. In 9 mines we have been through so many emotions (shock, sadness, grief, positivity, anger, frustration - you name it, we've been there!). At the time of starting the course we were in the mindset of "acceptance" and knowing we have to work out the best way of dealing with things for the sake of all of us. I strongly believe we wouldn't have got so much out of the course had we been in any other frame of mind.
Out of interest do they charge?

thepeoplespal

1,640 posts

278 months

Friday 20th December 2019
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Teddy Lop said:
thanks but I'm not sure its talking so much as research and understanding the broad outlines and what and how and what you can do, where I should go for this.

For example (I'm told these are practically the definition of attention deficit) if I'm in a really noisy environment, perhaps someone's using a 2 stroke leaf blower or an impactor, most people just shout and continue their conversation instead of talking - I cant - my brain just shuts down and I struggle to focus to form a sentence. Its only this being recognised as AD that I can simply say "hey lets go to the other room". This sounds so simple but you simply don't think to do so, the recognition you have a bit of a genuine impediment gives you ownership and the ability to spot where you're struggling unnecessarily.

Something else I really struggle with is concentration when there's attention-catching noise - i can't read with the telly on as my brain can't tune it out. This is also often a problem on sites as I'm planning cable routes or downlight placement in relation to unhelpfully placed joist, and someone's exercising their Geneva rights to have radio 1 blaring away. To me, the effect on my brain is the same as asking you to trace a picture while jolting your arm repeatedly, it's that invasive. Now complaining about a site radio will only make you a problematic individual, so I want to find out what methods there are that I can deal with this better.

The above are quite AD specific but I've written a whole list of little traits I have that are pretty much autism flags that I'd like to think about.
Airry to hijack thread...
It might be worth getting the top of the range Sony or Bose noise cancelling headphones, if you want to concentrate.

My wife got me the Sony (think they are about £250+ these days) ones for my birthday and I'm sure she thinks I'm ignoring her, when I just can't hear her. Found them good on a flight as well, you dont have to use the 30 hour (it goes more like a day) on bluetooth music, it can be Noise Cancelling on their own.

A hand over the earphone sees it use microphone to increase volume of voices.

Teddy Lop

8,301 posts

68 months

Saturday 21st December 2019
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thepeoplespal said:
Airry to hijack thread...
It might be worth getting the top of the range Sony or Bose noise cancelling headphones, if you want to concentrate.

My wife got me the Sony (think they are about £250+ these days) ones for my birthday and I'm sure she thinks I'm ignoring her, when I just can't hear her. Found them good on a flight as well, you dont have to use the 30 hour (it goes more like a day) on bluetooth music, it can be Noise Cancelling on their own.

A hand over the earphone sees it use microphone to increase volume of voices.
closed back or in-ear?

The thoughts occured to me but I see hugely differing opinions on their effectiveness, they'd have to be in-ear for site work and I'm loath to gamble £250. Also I wonder if there's a way psychologically to reduce my suseptibility to noise, I feel like it's getting worse as I age.

thepeoplespal

1,640 posts

278 months

Saturday 21st December 2019
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Massive big over ear jobbies I'm afraid, almost pass for ear defenders lol. Test the noise cancelling ability out in a Costco, they normally have both the Sony and Bose on display.

wiggy001

Original Poster:

6,545 posts

272 months

Sunday 5th January 2020
quotequote all
I've just realised that it was a year ago today that I started this thread and a big part of the reason for doing so was probably related to the stress of dealing with the Christmas period for a child with autism. I wouldn't say this Christmas was easy, but a year into understanding VIctoria's condition definitely meant we were more prepared this year, however the meltdowns, when they came, were must worst that they were a year ago.

Best thing we did this year was to stay at home with no visitors on boxing day (after a day with all my family on christmas day). We then saw my wife's family the next day followed by another day at home. The two "Christmas days" were fine a Victoria appeared to cope with everything ok but, as anyone living with autism will know, it's when they are back in their "safe place" that the stress, anxiety and anger comes flooding through!

Anyway, for those in a similar boat, I hope the Christmas period wasn't too stressful although I bet that, like us, you're looking forward to the "normal routine" of school tomorrow!

bexVN

14,682 posts

212 months

Sunday 5th January 2020
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I think, due to this thread some help has been provided to those following it.

Christmas has been relatively good for us but some days have been tough. When he is wound tight he will just let out high pitched and loud screeches which we try and ignore but he will sometimes do it repeatedly, however if you ask if he can try to be a bit quieter hee gets very upset because he doesn't often know what we are referrring as he doesn't realise he is doing it! He has done it a lot over Christmas. Lots of other behaviours but not going to list them all now! And he has also been brilliant fun smile
Our son had a meeting just before Christmas with the paediatricians, Just 10 mins in and the nurse could see many tell tale signs from his body language, mannerisms, way of speaking and general interaction.

Her line of questioning etc leads me to think we are definitely looking at Aspergers (which I have believed him to be for a long time now) . She is referring us but could be a bit of a wait.

It was reassuring to have some one completely understand the challenges we're having and reassuring that we aren't imagining things (I think his teacher has provided info to them as well)

I hope 2020 is a good year for you and your family.

Edited by bexVN on Sunday 5th January 19:10

gazza285

9,839 posts

209 months

Sunday 5th January 2020
quotequote all
Had a bad Christmas, we have a referral, but no idea of the time scale. I was hoping this time would be quicker, as we have been in this situation before, but there is no sign of that happening. Looking at private CBT now. He is meant to be back in college on Tuesday, but I can not see that happening.

On top of all his problems, he has also become quite depressed, as he has a better understanding of what is happening to him this time round.

It is a kick in the teeth after four good years.

oldbanger

4,316 posts

239 months

Monday 6th January 2020
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Both kids had big anxieties in the run up to the holidays. My eldest has started hair pulling again but her hair’s so thick it doesn’t notice too much yet. My younger daughter has been school refusing and was shrieking a lot

Christmas itself was relatively quiet. We had my father visiting and staying in a local hotel. He wanted to eat out every day. My youngest managed Christmas Eve and Christmas day, had a meltdown before we went so we were late but coped fairly well at the restaurant. She refused to come out after that. She is obsessed with having an iPhone X which is totally inappropriate, as she has smashed every phone she owns, so there has been some fallout there. We were also supposed to be going to a panto but she refused to go and so only 2 of us went in the end. But we’ve all survived

For some reason my youngest has become very racist and homophobic. I have no idea where it has come from. Two years ago she picked a pride t shirt out at the shop and would wear it regularly. Now she rants like some crazy red neck. I’ve tried the nuclear option and it just made her worse, talking to her has not helped, so now I am trying not to react to see if that stops it ( some of this is to get attention I think)

First day of school tomorrow so we’ll see how we go. Could be a tough one

Edited by oldbanger on Monday 6th January 00:42

sparkyhx

4,156 posts

205 months

Sunday 12th January 2020
quotequote all
gazza285 said:
Had a bad Christmas, we have a referral, but no idea of the time scale. I was hoping this time would be quicker, as we have been in this situation before, but there is no sign of that happening. Looking at private CBT now. He is meant to be back in college on Tuesday, but I can not see that happening.

On top of all his problems, he has also become quite depressed, as he has a better understanding of what is happening to him this time round.

It is a kick in the teeth after four good years.
Depression and mental health issues go with the territory i'm afraid. CBT as a rule doesn't work well with people on the autistic spectrum. Any therapist needs to have an understanding of autism and how to work with them and they are few and far between. What part of the country are you? My wife is a specialist autism psychotherapist and also trainer of therapists, she may be able to point you in the right direction. We also run regular day long courses for parents, relatives, carers, medical professionals, caring professions, education etc.

Also again depending on the area of the country will depend on your wait time some areas are much better than others. Our local authority has a pretty much 3 year waiting list and a poor diagnostic record when you finally do get to see someone.

There are generally two diagnostic methods ADOS and DISCO. ADOS is very prescriptive (e.g. does the person make eye contact) and is poor with Adults as many adults have learnt to mask symptoms and if they use those strategies in the assessment they can 'appear' normal and don't get a diagnosis. Have you considered going private if you have the money, again location may be a factor in such a decision. Costs vary from circa 700 to thousands. The waiting time with my son and daughter basically screwed them over, as by the time they got their diagnosis' it was too late to do anything about their secondary education. However for Uni it helped.

Search of the AQ test and RAAD test online, although they are not diagnostic tools, they do give a strong indication.


Edited by sparkyhx on Sunday 12th January 17:41

sparkyhx

4,156 posts

205 months

Sunday 12th January 2020
quotequote all
gazza285 said:
Had a bad Christmas, we have a referral, but no idea of the time scale. I was hoping this time would be quicker, as we have been in this situation before, but there is no sign of that happening. Looking at private CBT now. He is meant to be back in college on Tuesday, but I can not see that happening.

On top of all his problems, he has also become quite depressed, as he has a better understanding of what is happening to him this time round.

It is a kick in the teeth after four good years.
Depression and mental health issues go with the territory i'm afraid. CBT as a rule doesn't work with people on the autistic spectrum. Any therapist needs to have an understanding of autism and how to work with them and they are few and far between. What part of the country are you? My wife is a specialist autism psychotherapist and also trainer of therapists, she may be able to point you in the right direction. We also run regular day long courses for parents, relatives, carers, medical professionals, caring professions, education etc.

Also again depending on the area of the country will depend on your wait time some areas are much better than others. Our local authority has a pretty much 3 year waiting list and a poor diagnostic record when you finally do get to see someone.

There are generally two diagnostic methods ADOS and DISCO. ADOS is very prescriptive (e.g. does the person make eye contact) and is poor with Adults as many adults have learnt to mask symptoms and if they use those strategies in the assessment they can 'appear' normal and don't get a diagnosis. Have you considered going private if you have the money, again location may be a factor in such a decision. Costs vary from circa 700 to thousands. The waiting time with my son and daughter basically screwed them over, as by the time they got their diagnosis' it was too late to do anything about their secondary education. However for Uni it helped.

Search of the AQ test and RAAD test online, although they are not diagnostic tools, they do give a strong indication.


Edited by sparkyhx on Sunday 12th January 17:50

gazza285

9,839 posts

209 months

Monday 13th January 2020
quotequote all
sparkyhx said:
gazza285 said:
Had a bad Christmas, we have a referral, but no idea of the time scale. I was hoping this time would be quicker, as we have been in this situation before, but there is no sign of that happening. Looking at private CBT now. He is meant to be back in college on Tuesday, but I can not see that happening.

On top of all his problems, he has also become quite depressed, as he has a better understanding of what is happening to him this time round.

It is a kick in the teeth after four good years.
Depression and mental health issues go with the territory i'm afraid. CBT as a rule doesn't work with people on the autistic spectrum. Any therapist needs to have an understanding of autism and how to work with them and they are few and far between. What part of the country are you? My wife is a specialist autism psychotherapist and also trainer of therapists, she may be able to point you in the right direction. We also run regular day long courses for parents, relatives, carers, medical professionals, caring professions, education etc.

Also again depending on the area of the country will depend on your wait time some areas are much better than others. Our local authority has a pretty much 3 year waiting list and a poor diagnostic record when you finally do get to see someone.

There are generally two diagnostic methods ADOS and DISCO. ADOS is very prescriptive (e.g. does the person make eye contact) and is poor with Adults as many adults have learnt to mask symptoms and if they use those strategies in the assessment they can 'appear' normal and don't get a diagnosis. Have you considered going private if you have the money, again location may be a factor in such a decision. Costs vary from circa 700 to thousands. The waiting time with my son and daughter basically screwed them over, as by the time they got their diagnosis' it was too late to do anything about their secondary education. However for Uni it helped.

Search of the AQ test and RAAD test online, although they are not diagnostic tools, they do give a strong indication.
Thank you for your response, we live in West Yorkshire.

I should be clearer. When I said we are waiting for a referral, I meant for therapy, we already have a diagnosis for his condition. The last big crisis point was when he moved up to high school, and he responded to CBT very well, so that is the first course of action this time.

The college and CAMHS are moving quickly on this, which has surprised me, and he had an initial meeting last week, and will be having a CBT session at nine this morning.



sparkyhx

4,156 posts

205 months

Monday 13th January 2020
quotequote all
gazza285 said:
sparkyhx said:
gazza285 said:
Had a bad Christmas, we have a referral, but no idea of the time scale. I was hoping this time would be quicker, as we have been in this situation before, but there is no sign of that happening. Looking at private CBT now. He is meant to be back in college on Tuesday, but I can not see that happening.

On top of all his problems, he has also become quite depressed, as he has a better understanding of what is happening to him this time round.

It is a kick in the teeth after four good years.
Depression and mental health issues go with the territory i'm afraid. CBT as a rule doesn't work with people on the autistic spectrum. Any therapist needs to have an understanding of autism and how to work with them and they are few and far between. What part of the country are you? My wife is a specialist autism psychotherapist and also trainer of therapists, she may be able to point you in the right direction. We also run regular day long courses for parents, relatives, carers, medical professionals, caring professions, education etc.

Also again depending on the area of the country will depend on your wait time some areas are much better than others. Our local authority has a pretty much 3 year waiting list and a poor diagnostic record when you finally do get to see someone.

There are generally two diagnostic methods ADOS and DISCO. ADOS is very prescriptive (e.g. does the person make eye contact) and is poor with Adults as many adults have learnt to mask symptoms and if they use those strategies in the assessment they can 'appear' normal and don't get a diagnosis. Have you considered going private if you have the money, again location may be a factor in such a decision. Costs vary from circa 700 to thousands. The waiting time with my son and daughter basically screwed them over, as by the time they got their diagnosis' it was too late to do anything about their secondary education. However for Uni it helped.

Search of the AQ test and RAAD test online, although they are not diagnostic tools, they do give a strong indication.
Thank you for your response, we live in West Yorkshire.

I should be clearer. When I said we are waiting for a referral, I meant for therapy, we already have a diagnosis for his condition. The last big crisis point was when he moved up to high school, and he responded to CBT very well, so that is the first course of action this time.

The college and CAMHS are moving quickly on this, which has surprised me, and he had an initial meeting last week, and will be having a CBT session at nine this morning.
I'm Halifax, I see you have posted in a Hudd Town thread so are you in Hudds?
Is he in an FE college or secondary college? Moving to high school is a classic time to have problems, we see it so much especially with girls who often go under the diagnostic radar.

I hope the CBT goes ok, I wasn't dissing it, its just that the autistic traits of résistance to change and rigid thinking don't help adoption of CBT techniques. Similarly co-morbid conditions such as ADHD/ADD, Dyslexia, Alexithymia, Pathological Demand Avoidance (PDA) don't help either.

If you want to examine other avenues give me a shout.
The next 'introduction' course we run is at the start of May.

If you do a search for 'aspire autism raining' you will find both the training and therapy sites for my wife (Halifax) and business partner (N Leeds) . 'Aspire' appears to be quite a common name for autism related things these days, but use common sense in 'filtering' the results.

Don't want to link direct as it doesn't feel right. Alternatively go on NAS forums and seek recommendations.


gazza285

9,839 posts

209 months

Tuesday 14th January 2020
quotequote all
sparkyhx said:
I'm Halifax, I see you have posted in a Hudd Town thread so are you in Hudds?
Is he in an FE college or secondary college? Moving to high school is a classic time to have problems, we see it so much especially with girls who often go under the diagnostic radar.


I’ll have a look, and thanks.

We are in Huddersfield, my lad is in FE college.

He came home yesterday in a much more positive mood, his therapy seemed to have gone well, however today he came home very depressed again.

His maths tutor took him out of the lesson and suggested that he should think about dropping his further maths A-level, this did not go down well. It also didn’t go down well with the SENCO either, who apparently gave the tutor a bit of a bking, and we have had an apology from said tutor. It did boil my piss a bit, it has to be said. Nothing like kicking a kid when he’s down.



gazza285

9,839 posts

209 months

Thursday 16th January 2020
quotequote all
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.

Hammer67

5,749 posts

185 months

Thursday 16th January 2020
quotequote all
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.
Been there old son. I feel your pain. Hang in there, look after yourself and Mrs gazza.

bexVN

14,682 posts

212 months

Thursday 16th January 2020
quotequote all
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.
I am so sorry to read this gazza285, I can't begin to imagine how stressful and upsetting this is.

The future is a worry isn't it. My sons anxiety/paranoia and triggers are escalating and I will be honest I am finding it really hard to know how to handle his outbursts right now. Yesterday was so bad from when he got home from school to bed, I was totally drained and feeling like the worst parent. Today was a better but still hard work.

I really hope things aren't too serious and I hope your wife is ok. Stay in touch on here. It can be good to vent.