[Misc] Autism - Neurodiversity

[BadFish]

As a person who is terminally terrible with money (and neuro diverse) I found this very interesting. Not so much the subscription thing as I always kind of saw where that was heading and understood my inability to cancel stuff like that. My own examples of similar are long and varied though.

To be fair I have worked on this and am now much better than I was.

Does this strike a chord with anyone else?

'Neurodivergent tax' is a price autistic people like me have to pay

If you're autistic, managing things like phone calls is much harder, and things like subscription payments can go on being collected for years

www.bigissue.com

 

[Harry Wilson's tackle]

As a person who is terminally terrible with money (and neuro diverse) I found this very interesting. Not so much the subscription thing as I always kind of saw where that was heading and understood my inability to cancel stuff like that. My own examples of similar are long and varied though.

To be fair I have worked on this and am now much better than I was.

Does this strike a chord with anyone else?

'Neurodivergent tax' is a price autistic people like me have to pay

If you're autistic, managing things like phone calls is much harder, and things like subscription payments can go on being collected for years

www.bigissue.com

Over 10 years I paid more than £200 to 'insure' a £30 phone I had upgraded (got rid of) after 2 years.

I now keep spreadsheets for everything.

 

[BadFish]

Over 10 years I paid more than £200 to 'insure' a £30 phone I had upgraded (got rid of) after 2 years.

I now keep spreadsheets for everything.

I can relate to this, my problem is more around collecting money that I am entitled to. Back in my teens I struggled with a trip to the housing benefits office to sort out rent payments. Not sure how I got out of that one, probably my parents bailed me out. I was pretty f***ed up at the time and put it down to that and lifestyle.

Spreadsheets are a lifesaver, as is internet banking and being able to do most things online. I have always struggled with the basic mundanes of life. Always a source of embarrassment and humiliations for me as I never understood why I couldn't do it. (Ha, talking like its all in the past and here I am posting on NSC when I am supposed to be working ).

I have just ordered this to try an get some more control of my inattentive ADHD

Hhttps://www.booktopia.com.au/you-mean-i-m-not-lazy-stupid-or-crazy--kate-kelly/book/9780743264488.html

Also ordered this from a guy I follow on linkedin - this https://www.booktopia.com.au/untypical-pete-wharmby/book/9780008529277.html)

 

[Harry Wilson's tackle]

<snip> Autism I believe is a superpower.

It is. Provided the person, or those around them, can find the space for it to be so.

I don't have any answers but my thing has always been to fight for what is right, and choose battles that are winnable. Or seem winnable. Ahem.

Luckily I have no ambition so creating space where I can be left to get on with what I want to do is all I need. I have ended up proud of my achievements, the purity of my academic research and the love of my close family.

None of the advice I have been given has ever been much use. Doing and being what other people want me to do/be is a non starter.

But when you can find a way to make things work.....yes, the superpowers can allow you to do great things.

I could have accepted Slytherin, but I chose Gryffindor.

 

[BadFish]

Just a reminder that it is autism awareness week

World Autism Acceptance Week 2023

World Autism Acceptance Week 2023

www.autism.org.uk

 

[Rambo]

I am reading back through this thread today for some comfort.

My son, who is 4 next month is non verbal autistic and has severe learning difficulties.

The last few weeks have been really testing for me and my wife. He is on a keto diet because he has severe epilepsy, this mean my wife is up to midnight most nights cooking.

The reality of our life going forward has really set in recently, we have always held out hope but as time goes on that hope gets less and less.

The effect it is having on our family and my 6 yr old daughter is so hard to bare.

To see my son in so much distress is heartbreaking, feeling a bit lost at the moment.

These poor kids are locked in a world of their own with no escape, a gift it is not.

World autism day on Sunday. It’s great but the vast majority have no interest and no need to have interest. I am not angry at that, it is what it is.

 

[Harry Wilson's tackle]

I am reading back through this thread today for some comfort.

My son, who is 4 next month is non verbal autistic and has severe learning difficulties.

The last few weeks have been really testing for me and my wife. He is on a keto diet because he has severe epilepsy, this mean my wife is up to midnight most nights cooking.

The reality of our life going forward has really set in recently, we have always held out hope but as time goes on that hope gets less and less.

The effect it is having on our family and my 6 yr old daughter is so hard to bare.

To see my son in so much distress is heartbreaking, feeling a bit lost at the moment.

These poor kids are locked in a world of their own with no escape, a gift it is not.

World autism day on Sunday. It’s great but the vast majority have no interest and no need to have interest. I am not angry at that, it is what it is.

Sorry to read that. Huge difference between those who can and those who can't communicate. I trust you have sought and are receiving all the support there is?

 

[Rambo]

Sorry to read that. Huge difference between those who can and those who can't communicate. I trust you have sought and are receiving all the support there is?

As much as we can yes. Thanks for asking, appreciate it

 

[PILTDOWN MAN]

As much as we can yes. Thanks for asking, appreciate it

My daughter had to fight and fight to get help, finally she was able to get my 9 year old grandson into the QE11 School in Horsham. He travels from Haywards Heath by taxi each day, again a huge step, he however loves it and has really started to progress.

I remember the school opening as it is in the grounds of Forest Boys, and I was there when the Queen came to the school.

He will now be at the school until 18. My 11 year old granddaughter though not confirmed does certainly show traits also and I witness the struggles within the family home. I had my grandson for the weekend just gone and blimey I was knackered by Sunday evening.

 

[Solid at the back]

I am reading back through this thread today for some comfort.

My son, who is 4 next month is non verbal autistic and has severe learning difficulties.

The last few weeks have been really testing for me and my wife. He is on a keto diet because he has severe epilepsy, this mean my wife is up to midnight most nights cooking.

The reality of our life going forward has really set in recently, we have always held out hope but as time goes on that hope gets less and less.

The effect it is having on our family and my 6 yr old daughter is so hard to bare.

To see my son in so much distress is heartbreaking, feeling a bit lost at the moment.

These poor kids are locked in a world of their own with no escape, a gift it is not.

World autism day on Sunday. It’s great but the vast majority have no interest and no need to have interest. I am not angry at that, it is what it is.

I know how you feel. It infuriates me that people have no understanding of autism. I'm guilty, I had no idea before we learned about it. But, people still use words like "special" and "retard" as insults.

My son was 4 last month and is non verbal, high-functioning autistic and was diagnosed at 3 years old (I'm told that is early). He's never said a word. Everyone says "you need to have hope, you need to be positive" - something I struggle with because I am a naturally pessimistic person that plenty of people will tell you because of my match day posts on here in years gone by.

My partner and I always wanted two children, but have massive reservations now. We're not sure how we would be able to cope just incase we had another high-functioning autistic child. On top of that we really struggle financially. My partner had to give up her job because nursery refuse to take him anymore then two mornings per week. They say they're full, but what they really mean and can't say is that they can't cope with him because they continue to advertise across Sussex that they have spaces.

More positively though, he has just been accepted into a specialist, high-functioning autism only school in Sussex. A brand new one, we went to see it today. It's amazing
Only 8 pupils per year and he will stay until he is 16. I saw children similar to my son. It was very emotional, I was in tears - happy ones - it made me realise that he is going to get the help he needs, he won't be bullied and he will be accepted there for who he is.

 

[darkwolf666]

I am reading back through this thread today for some comfort.

My son, who is 4 next month is non verbal autistic and has severe learning difficulties.

The last few weeks have been really testing for me and my wife. He is on a keto diet because he has severe epilepsy, this mean my wife is up to midnight most nights cooking.

The reality of our life going forward has really set in recently, we have always held out hope but as time goes on that hope gets less and less.

The effect it is having on our family and my 6 yr old daughter is so hard to bare.

To see my son in so much distress is heartbreaking, feeling a bit lost at the moment.

These poor kids are locked in a world of their own with no escape, a gift it is not.

World autism day on Sunday. It’s great but the vast majority have no interest and no need to have interest. I am not angry at that, it is what it is.

I read this with a feeling of sadness and not a little realisation that this future is shared by many parents of children with autism.

I watched the recent Chris Packham programme on autism. I loved the idea of it giving autistic children a voice, but in reality that’s not always the case - for many autism is anything but a gift. Not all autistic children are a bit quirky, or a bit “different”, clever with numbers or all the other cliches. For many autistic children the future for them, and their parents/carers is one of total dependence, a future that at some point will end up with them being cared for by strangers.

Autism isn’t always about just being a bit different.

It‘s of little comfort to you, but my thoughts are with you for the future. Take care!

 

[Rambo]

I know how you feel. It infuriates me that people have no understanding of autism. I'm guilty, I had no idea before we learned about it. But, people still use words like "special" and "retard" as insults.

My son was 4 last month and is non verbal, high-functioning autistic and was diagnosed at 3 years old (I'm told that is early). He's never said a word. Everyone says "you need to have hope, you need to be positive" - something I struggle with because I am a naturally pessimistic person that plenty of people will tell you because of my match day posts on here in years gone by.

My partner and I always wanted two children, but have massive reservations now. We're not sure how we would be able to cope just incase we had another high-functioning autistic child. On top of that we really struggle financially. My partner had to give up her job because nursery refuse to take him anymore then two mornings per week. They say they're full, but what they really mean and can't say is that they can't cope with him because they continue to advertise across Sussex that they have spaces.

More positively though, he has just been accepted into a specialist, high-functioning autism only school in Sussex. A brand new one, we went to see it today. It's amazing
Only 8 pupils per year and he will stay until he is 16. I saw children similar to my son. It was very emotional, I was in tears - happy ones - it made me realise that he is going to get the help he needs, he won't be bullied and he will be accepted there for who he is.

This is heartwarming to hear, so pleased you have got into a school like that, with the right support who knows what is possible. Good luck and don’t let it put you off having another, we have a very healthy and neuro typical daughter too, and she is amazing at how well she copes with her little brother and mummy and daddy. Always here for a chat if you fancy one.

 

[Rambo]

Th

I read this with a feeling of sadness and not a little realisation that this future is shared by many parents of children with autism.

I watched the recent Chris Packham programme on autism. I loved the idea of it giving autistic children a voice, but in reality that’s not always the case - for many autism is anything but a gift. Not all autistic children are a bit quirky, or a bit “different”, clever with numbers or all the other cliches. For many autistic children the future for them, and their parents/carers is one of total dependence, a future that at some point will end up with them being cared for by strangers.

Autism isn’t always about just being a bit different.

It‘s of little comfort to you, but my thoughts are with you for the future. Take care

Thank you for your kind words. Appreciate it.

 

[Fungus]

As a person who is terminally terrible with money (and neuro diverse) I found this very interesting. Not so much the subscription thing as I always kind of saw where that was heading and understood my inability to cancel stuff like that. My own examples of similar are long and varied though.

To be fair I have worked on this and am now much better than I was.

Does this strike a chord with anyone else?

'Neurodivergent tax' is a price autistic people like me have to pay

If you're autistic, managing things like phone calls is much harder, and things like subscription payments can go on being collected for years

www.bigissue.com

Ha, I read the Big Issue article at lunchtime, and found it interesting, so checked the book on Amazon… top of the page was the offer “Free with Audible trial subscription”.

 

[darkwolf666]

Th

Thank you for your kind words. Appreciate it.

No problem. Your situation so echoed my own that I felt compelled to add to the conversation.

good luck…

 

[Pondicherry]

I am reading back through this thread today for some comfort.

My son, who is 4 next month is non verbal autistic and has severe learning difficulties.

The last few weeks have been really testing for me and my wife. He is on a keto diet because he has severe epilepsy, this mean my wife is up to midnight most nights cooking.

The reality of our life going forward has really set in recently, we have always held out hope but as time goes on that hope gets less and less.

The effect it is having on our family and my 6 yr old daughter is so hard to bare.

To see my son in so much distress is heartbreaking, feeling a bit lost at the moment.

These poor kids are locked in a world of their own with no escape, a gift it is not.

World autism day on Sunday. It’s great but the vast majority have no interest and no need to have interest. I am not angry at that, it is what it is.

I don't think I can write anything that will make things better for you so I will just share my experience with severely autistic children and hope its a help in a very small way. I worked in a special needs school in Cranleigh for three years. It was very poorly paid (which was why I gave it up in the end) and very hard work physically and mentally and in terms of the skill required to handle the children. These were very autistic children, around half were residential. There were lots of low points every day but also high points. Progress with an autistic child seems to me to be slower but is more significant when made. We did develop tricks and strategies to handle particular children. All of the children were different though so you had to 'learn' each child in terms of what worked and what didn't. However I was working 8:00 -16:00 (in a class of 5 children, 1-1 supervision) and was very glad when at 4 we could either pack them into taxis and send them home (a mission in itself) or hand them over to the residential staff. So in a very small way I can understand the pressure of looking after an autistic child 24/7. I don't know what help is available now in Sussex but in Surrey there used to be special needs schools, some of which were residential and some of which offered respite (we did both). You will know this already but routine is key for most autistic children. As an example, we used to stack trays with simple tasks in (colour matching, shapes, word games). We could stack 10 trays in front of a pretty disruptive autistic child and they would pretty quickly learn to work through them without supervision. Pretty repressive to see when compared to their normal behavior. I did work with non verbal children. One was non verbal by choice so could speak and would on very rare occasions speak but most of the time chose not to (frustrating). The others were non verbal through ability I guess. All of them could write their names though and sign (a version of BSL). Some bad behavior was a direct result of autism but some was just normal 'being naughty' behavior and the skill was being able to recognize the difference. Sorry this is a bit of a ramble. At least you know there are other people interested.

 

[Rambo]

I don't think I can write anything that will make things better for you so I will just share my experience with severely autistic children and hope its a help in a very small way. I worked in a special needs school in Cranleigh for three years. It was very poorly paid (which was why I gave it up in the end) and very hard work physically and mentally and in terms of the skill required to handle the children. These were very autistic children, around half were residential. There were lots of low points every day but also high points. Progress with an autistic child seems to me to be slower but is more significant when made. We did develop tricks and strategies to handle particular children. All of the children were different though so you had to 'learn' each child in terms of what worked and what didn't. However I was working 8:00 -16:00 (in a class of 5 children, 1-1 supervision) and was very glad when at 4 we could either pack them into taxis and send them home (a mission in itself) or hand them over to the residential staff. So in a very small way I can understand the pressure of looking after an autistic child 24/7. I don't know what help is available now in Sussex but in Surrey there used to be special needs schools, some of which were residential and some of which offered respite (we did both). You will know this already but routine is key for most autistic children. As an example, we used to stack trays with simple tasks in (colour matching, shapes, word games). We could stack 10 trays in front of a pretty disruptive autistic child and they would pretty quickly learn to work through them without supervision. Pretty repressive to see when compared to their normal behavior. I did work with non verbal children. One was non verbal by choice so could speak and would on very rare occasions speak but most of the time chose not to (frustrating). The others were non verbal through ability I guess. All of them could write their names though and sign (a version of BSL). Some bad behavior was a direct result of autism but some was just normal 'being naughty' behavior and the skill was being able to recognize the difference. Sorry this is a bit of a ramble. At least you know there are other people interested.

The work you have done will be very much appreciated by parents. You are a good person and thank you for sharing your experiences.

Most people simply can’t handle it, so to be able to do what you did is a gift, I am just so sad that it’s so poorly paid.

I hope that one day when I am gone that my son gets care from someone like you who genuinely cares.

It’s a future I don’t want to think about too much.

 

[BadFish]

I am reading back through this thread today for some comfort.

My son, who is 4 next month is non verbal autistic and has severe learning difficulties.

The last few weeks have been really testing for me and my wife. He is on a keto diet because he has severe epilepsy, this mean my wife is up to midnight most nights cooking.

The reality of our life going forward has really set in recently, we have always held out hope but as time goes on that hope gets less and less.

The effect it is having on our family and my 6 yr old daughter is so hard to bare.

To see my son in so much distress is heartbreaking, feeling a bit lost at the moment.

These poor kids are locked in a world of their own with no escape, a gift it is not.

World autism day on Sunday. It’s great but the vast majority have no interest and no need to have interest. I am not angry at that, it is what it is.

Sorry to hear what you are going through, being non verbal and with cooccuring disabilities makes everything so much harder.

I am guessing you are all over this through school but there is a lot of progress happening with this technology here in Australia.

How new research is helping non-verbal people with autism find their voice

New research from Murdoch University lifts the lid on what barriers non-verbal people experience in using alternative communication devices.

www.google.com

I think the word is spreading about autism, weeks like this one help. People seem to be slowly getting more interested. We just need to keep spreading the word and trying to educate people.

 

[Rambo]

Sorry to hear what you are going through, being non verbal and with cooccuring disabilities makes everything so much harder.

I am guessing you are all over this through school but there is a lot of progress happening with this technology here in Australia.

How new research is helping non-verbal people with autism find their voice

New research from Murdoch University lifts the lid on what barriers non-verbal people experience in using alternative communication devices.

www.google.com

I think the word is spreading about autism, weeks like this one help. People seem to be slowly getting more interested. We just need to keep spreading the word and trying to educate people.

We have been trying to use PEC cards. The trouble is my boy finds it very hard to concentrate on anything long enough to make meaningful communication. I tried for over a year with trying to get him to give me a food PEC card when he wanted to eat, it did happen eventually but he now appears to have forgotten again. We seem to make small progress and then go back to square one again.

He is now starting to have bad meltdowns, these were not present before but I think he is getting very frustrated. We keep trying and keep hoping, its all we can do.

It is great that awareness is getting better, I am still miffed though at the lack of decent support available, I dont even mind paying for it, but its just not there.

 

[darkwolf666]

We have been trying to use PEC cards. The trouble is my boy finds it very hard to concentrate on anything long enough to make meaningful communication. I tried for over a year with trying to get him to give me a food PEC card when he wanted to eat, it did happen eventually but he now appears to have forgotten again. We seem to make small progress and then go back to square one again.

He is now starting to have bad meltdowns, these were not present before but I think he is getting very frustrated. We keep trying and keep hoping, its all we can do.

It is great that awareness is getting better, I am still miffed though at the lack of decent support available, I dont even mind paying for it, but its just not there.

The learning, then going back to square one is a familiar theme. Our boy had just got to the stage of putting a pre-loaded spoon to his mouth, when for whatever reason decided he no longer wants to do that. Now he won’t take any food off a spoon at all and will only eat finger foods.

As for PEC’s, well we have tried that too, with zero success. It seems it’s much easier for him to lead us, by the hand, then select pictures, to show his needs. For him, it’s like, why show them a picture of my drinks botlle, when I can just give them the bottle to meet my needs.

As for help, it is limited, but as mentioned, autism is such a broad spectrum (sic) that it is difficult to provide help for all…