Autism

[Jacksgranda]

37 minutes ago, Richey Edwards said:

I am "neurodivergent". I am Dyspraxic and also on the Autistic spectrum. I am 32 years old today, and have had people talk down to me and tell me that I would never amount to anything because I am too stupid and too different.

Here are examples of things I have struggled with at various stages, and how they were resolved/dealt with.

1. Tying shoelaces. I learned how to do this using the "bunny ears" method. I still use this method to tie my laces.

2. Riding a bike. I did not learn how to ride a bike until I was about ten. This was partly due to the balance issues of Dyspraxia, but a big part of this was confidence. I was frightened of falling off the bike and hurting myself. Once I got over this fear it was easy though.

3. Mathematics. I struggled with anything more complicated than addition and subtraction, and even at that I often double-check and triple-check that I have correctly worked sums out. I was good at other school subjects but always struggled with maths, and was often in the lowest maths group. My university course required me to sit a pre-entry mathematics exam, so I had to basically teach myself how to do maths in order to prepare for this. I have managed to get the hang of them though, and I sit regular numeracy tests at university and have got full marks for all of them. No one at school had ever gone through how to actually do equations etc with me, and I would have done better at school if someone had done that.

4. Social skills - I don't always say or do the "socially acceptable" thing in situations, and I dislike situations that involve engaging with a lot of people who I do not know. This is something that has improved as I have got older though.

5. New routines - I am a creature of routine and do not like it when that routine is disrupted. I like to plan things and get anxious when things don't work out how I thought they would or how I wanted them to. I realise that unforeseen things happen, and it's important to stay calm and deal with them and not get anxious about things that I cannot control. I cannot control external events, but I can control how I am going to react to them.

 

I was told by various people that I would never be able to hold a responsible job, or go to university to become a mental health nurse, or drive a car because my condition made me a "liability". I have done all of those things that I was told that I would never be able to do. Not bad for someone who was called "a spastic" and "a retard" by certain people.

 

The absolute best thing that can be done for your grand-daughter is that she is given love, respect and acceptance as she grows up. A diagnosis can provide an explanation, but a diagnosis does not define who she is. With the right support and guidance, the diagnosis will not prevent her from growing up to be who she wants to be and do what she wants to do.

 

Anyway, I have rambled on. I hope at least a little bit of what I have said has been useful. I wish your grand-daughter, your family and yourself the very best.

 

Best wishes,

Jamie

That's all very reminiscient of the young fella we looked after.

[BFTD]

@Richey Edwards - my son does the same things with shoelaces. We went with velcro shoes for a while, as it was just too frustrating for him, but one of the team at his school got him running with the bunny ears thing. I just couldn't explain it well enough.

Your experiences with mathematics point towards the spectrum wheel idea that @Boo Khaki posted. Maths is my boy's thing, and he's breezed through it all. Then again, it also sounds like your school did a shite job of teaching you, if you've gone on to do well in that area.

It's depressing to read that people as young as yourself still encountered folk more interested in enforcing failure than helping in any way. Hopefully your success feels like a good GIRUY to the lot of them. Unfortunately, they probably don't realise the damage they could have caused. I'll be very proud if my boy goes on to do as well as you.

[Crazy Days]

2 hours ago, Richey Edwards said:

I am "neurodivergent". I am Dyspraxic and also on the Autistic spectrum. I am 32 years old today, and have had people talk down to me and tell me that I would never amount to anything because I am too stupid and too different.

Here are examples of things I have struggled with at various stages, and how they were resolved/dealt with.

1. Tying shoelaces. I learned how to do this using the "bunny ears" method. I still use this method to tie my laces.

2. Riding a bike. I did not learn how to ride a bike until I was about ten. This was partly due to the balance issues of Dyspraxia, but a big part of this was confidence. I was frightened of falling off the bike and hurting myself. Once I got over this fear it was easy though.

3. Mathematics. I struggled with anything more complicated than addition and subtraction, and even at that I often double-check and triple-check that I have correctly worked sums out. I was good at other school subjects but always struggled with maths, and was often in the lowest maths group. My university course required me to sit a pre-entry mathematics exam, so I had to basically teach myself how to do maths in order to prepare for this. I have managed to get the hang of them though, and I sit regular numeracy tests at university and have got full marks for all of them. No one at school had ever gone through how to actually do equations etc with me, and I would have done better at school if someone had done that.

4. Social skills - I don't always say or do the "socially acceptable" thing in situations, and I dislike situations that involve engaging with a lot of people who I do not know. This is something that has improved as I have got older though.

5. New routines - I am a creature of routine and do not like it when that routine is disrupted. I like to plan things and get anxious when things don't work out how I thought they would or how I wanted them to. I realise that unforeseen things happen, and it's important to stay calm and deal with them and not get anxious about things that I cannot control. I cannot control external events, but I can control how I am going to react to them.

 

I was told by various people that I would never be able to hold a responsible job, or go to university to become a mental health nurse, or drive a car because my condition made me a "liability". I have done all of those things that I was told that I would never be able to do. Not bad for someone who was called "a spastic" and "a retard" by certain people.

 

The absolute best thing that can be done for your grand-daughter is that she is given love, respect and acceptance as she grows up. A diagnosis can provide an explanation, but a diagnosis does not define who she is. With the right support and guidance, the diagnosis will not prevent her from growing up to be who she wants to be and do what she wants to do.

 

Anyway, I have rambled on. I hope at least a little bit of what I have said has been useful. I wish your grand-daughter, your family and yourself the very best.

 

Best wishes,

Jamie

many thanks

have a great birthday

[Dunfermline Don]

21 hours ago, Crazy Days said:

8 yr old grand-daughter has just been diagnosed as being autistic and waiting on further results if she has ADHD or learning disability.  News was a kick in the balls and finding it hard to get the head round. She was born very premature and had a slight bleed on the brain but seemed normal.  Knew there was some degree of difficulty in her concentrating in the class room.

Concerns were raised and a private assessment has confirmed she is autistic and may be medium in the spectrum. Have no idea what her future may hold although she may need to go to specialist learning. She holds conversations etc well as far as we can see and appears bright enough, although there are issues with her eating lots of different food.

Really have no idea what all of this means.

Anyone with any similar knowledge or advice would be gratefully received.

I work with Scottish Autism, I mainly support adults who live in their own homes but the organisation deals with all ages.

I know we have a helpline that you can call if you would like some general advice. 

Edited August 11, 2022 by Dunfermline Don

[Raithie]

My son, who is 10, was diagnosed as Autistic when he was 4 however the peadiatrician was very quick to keep mentioning the fact he was high functioning. As if that made the diagnosis better. The diagnosis didn't come as a shock and we had some suspicions, even at an early age, primarily with hand flapping and would forever line up his toys and not exactly 'play' with them conventionally. He had really bad echolalia in his early years and was obsessed with routine.

I must admit I found the whole process incredibly straight forward - referred to a peadiatrician (some assessments done), referred on to Education Psychology, OT, Health Visitor, keyworker at nursery then a round the table discussion with all in agreement of an Autism diagnosis. My wife's friend, who's son appeared to be at the lower end of the spectrum in terms of extreme behaviours, structures/routines, meltdowns etc had same assessment process as us however one professional disagreed with Autism diagnosis so he then had to go through some fast tracked assessment quite some time down the line. He ended up getting an Autism diagnosis in the end. I must admit one of the reliefs of the assessments being concluded and a decision made was we could now just enjoy him for who he is and not have to constantly assess and analyse what he was doing to feed back to all these professionals. 

In the early days it was a bit tricky - if he knew we were going to the park then that's all he would have in his head, that was the routine. If we got in the car and realised we needed petrol he would have a bit of a moment to himself as the routine was now all to pot as we were now going somewhere else before the park. My wife did an open Uni course on the subject of Autism and we've both spent countless hours researching the condition and educating ourselves on the various tips and tricks to help kids with Autism cope in life. Certain situations would make him anxious i.e. I took him to the football and it was too noisy for him so we had to leave after 10 minutes, tried again a season or two later with no joy. The lead up to going back to school after the holidays - what will my teacher be like? Where do I line up? What's the plan? what am I doing? I need to know!?, going places - right where we going? how long will be? are we going to any other places?. He also had some big sensory issues and was also advised he had hypermobility (apparently common in Autistic kids). Because of that he's never been as overly mobile as his peers and could appear quite stiff in his movements. 

However today, as a 10 year old, it's almost night and day from his earlier years. He attends a mainstream school, has minimal input from the Pupil Support Assistant, is academically at the level he should be for his age and routines can be chopped and changed with not much in the way of any issues. I think getting his diagnosis at such an early age has been a blessing as the school have then managed to put all relevant supports in place. The school he goes to is fantastic and really on the ball. He's made many friends and we can let him out and about on his own with kids in the street if he wants to. He'll sleep throughout the night (that's never been a problem) and whilst he will try a range of foods (if we push him) he would quite happily eat the same foods everyday if he could. Socially though there are some minor issues, I hear how other kids in his class converse with one another and can see a marked difference to how he would respond/communicate. He still has some ticks that he can't control such as extreme hand flapping when excited, facial grimmacing and spinning in a circle with his head tilted to the side.....but for whateve reason he appears to only do this at home. He doesn't do it at school or in public. It's almost as if he knows his house is his safe space to let out some of his bouts of energy with no judgement. We've had some family round from time to time make comments that it must be hard work bringing up an Autistic child but nothing could be farther from the truth (for us anyway). He's a piece of cake to parent and I put that down to the research and education we've done. It's now something ingrained in us when it comes to our parenting, we know the trigger signs if he's getting stressed/anxious and can put into place measures that help him. A simple "right son, you've got 5 minutes until we have to leave/go to bed/get yourself ready". He is a bit of a lazy sod at times, it's a mission to get him to shower himself or get himself ready so trying to teach him the importance of personal care and independence is something we're working on just now.

....and he's now a season ticket holder at the Rovers which is an incredibly proud father moment to see him sitting next to me, singing away and enjoying being at the football.

[Jacksgranda]

54 minutes ago, Raithie said:

My son, who is 10, was diagnosed as Autistic when he was 4 however the peadiatrician was very quick to keep mentioning the fact he was high functioning. As if that made the diagnosis better. The diagnosis didn't come as a shock and we had some suspicions, even at an early age, primarily with hand flapping and would forever line up his toys and not exactly 'play' with them conventionally. He had really bad echolalia in his early years and was obsessed with routine.

I must admit I found the whole process incredibly straight forward - referred to a peadiatrician (some assessments done), referred on to Education Psychology, OT, Health Visitor, keyworker at nursery then a round the table discussion with all in agreement of an Autism diagnosis. My wife's friend, who's son appeared to be at the lower end of the spectrum in terms of extreme behaviours, structures/routines, meltdowns etc had same assessment process as us however one professional disagreed with Autism diagnosis so he then had to go through some fast tracked assessment quite some time down the line. He ended up getting an Autism diagnosis in the end. I must admit one of the reliefs of the assessments being concluded and a decision made was we could now just enjoy him for who he is and not have to constantly assess and analyse what he was doing to feed back to all these professionals. 

In the early days it was a bit tricky - if he knew we were going to the park then that's all he would have in his head, that was the routine. If we got in the car and realised we needed petrol he would have a bit of a moment to himself as the routine was now all to pot as we were now going somewhere else before the park. My wife did an open Uni course on the subject of Autism and we've both spent countless hours researching the condition and educating ourselves on the various tips and tricks to help kids with Autism cope in life. Certain situations would make him anxious i.e. I took him to the football and it was too noisy for him so we had to leave after 10 minutes, tried again a season or two later with no joy. The lead up to going back to school after the holidays - what will my teacher be like? Where do I line up? What's the plan? what am I doing? I need to know!?, going places - right where we going? how long will be? are we going to any other places?. He also had some big sensory issues and was also advised he had hypermobility (apparently common in Autistic kids). Because of that he's never been as overly mobile as his peers and could appear quite stiff in his movements. 

However today, as a 10 year old, it's almost night and day from his earlier years. He attends a mainstream school, has minimal input from the Pupil Support Assistant, is academically at the level he should be for his age and routines can be chopped and changed with not much in the way of any issues. I think getting his diagnosis at such an early age has been a blessing as the school have then managed to put all relevant supports in place. The school he goes to is fantastic and really on the ball. He's made many friends and we can let him out and about on his own with kids in the street if he wants to. He'll sleep throughout the night (that's never been a problem) and whilst he will try a range of foods (if we push him) he would quite happily eat the same foods everyday if he could. Socially though there are some minor issues, I hear how other kids in his class converse with one another and can see a marked difference to how he would respond/communicate. He still has some ticks that he can't control such as extreme hand flapping when excited, facial grimmacing and spinning in a circle with his head tilted to the side.....but for whateve reason he appears to only do this at home. He doesn't do it at school or in public. It's almost as if he knows his house is his safe space to let out some of his bouts of energy with no judgement. We've had some family round from time to time make comments that it must be hard work bringing up an Autistic child but nothing could be farther from the truth (for us anyway). He's a piece of cake to parent and I put that down to the research and education we've done. It's now something ingrained in us when it comes to our parenting, we know the trigger signs if he's getting stressed/anxious and can put into place measures that help him. A simple "right son, you've got 5 minutes until we have to leave/go to bed/get yourself ready". He is a bit of a lazy sod at times, it's a mission to get him to shower himself or get himself ready so trying to teach him the importance of personal care and independence is something we're working on just now.

....and he's now a season ticket holder at the Rovers which is an incredibly proud father moment to see him sitting next to me, singing away and enjoying being at the football.

Great read! 

[Florentine_Pogen]

19 minutes ago, Jacksgranda said:

Great read! 

Certainly was....every day's a school day on Pn'B.

[EvilScotsman]

My son (now 10) also has an ASD diagnosis; it was first suggested when he was at nursery at 4 (I think), and if memory serves the actual diagnosis followed fairly quickly. I do remember struggling to accept it for a while, but as many others have said it doesn't actually change who they are in any way. I also agree that the support available is night and day even from that which would have been available for @Richey Edwards when he was a nipper (not too long ago, either). My lad is in a mainstream school, though as a result of the layout (2 separate classes of 30 in each classroom) he can't cope with being in with the other kids too much. He has a lot of 1 to 1 time and they've been brilliant at communicating with us so we are on the same page with what happens at home and at school. I am in England though, so what others have said about their experiences with school is probably more relevant.

In terms of his behaviour, he'll have the occasional meltdown where he is uncontrollable, though it happens far less now than it used to. When it does occur, it's pretty much a case of making sure he doesn't hurt himself or anyone else until he comes out of it. We've been doing a lot of work (along with school) on using his words to express his feelings before he gets to the stage of losing his temper. He does struggle with loud noises (especially unexpected ones) and generally noisy environments, and his sleeping pattern can be frustrating.

By and large though, he's a lovely lad. He says he has "big feelings" which seems to me a pretty accurate description; his likes and dislikes are quite intense, and he can be very affectionate for a 10 year old boy. On the other hand, he can be quite vicious with his words and doesn't seem to quite get how much the things he says can hurt other people. He does have some inkling that he's different from other kids, but we haven't had the conversation yet; without wishing to hijack the thread, I'd be interested to know from others at what age they sat their kids down to discuss the diagnosis, and how they went about it?

Can You See Me (and its two follow ups) are very interesting reading; they're written by an teenage girl with ASD, in conjunction with a children's author. Also The Reason I Jump, which is written by a non-verbal austistic person, and I've just learned it was made into a film a couple of years ago.

[BFTD]

1 hour ago, Raithie said:

My son, who is 10, was diagnosed as Autistic when he was 4 however the peadiatrician was very quick to keep mentioning the fact he was high functioning. As if that made the diagnosis better. The diagnosis didn't come as a shock and we had some suspicions, even at an early age, primarily with hand flapping and would forever line up his toys and not exactly 'play' with them conventionally. He had really bad echolalia in his early years and was obsessed with routine.

I must admit I found the whole process incredibly straight forward - referred to a peadiatrician (some assessments done), referred on to Education Psychology, OT, Health Visitor, keyworker at nursery then a round the table discussion with all in agreement of an Autism diagnosis. My wife's friend, who's son appeared to be at the lower end of the spectrum in terms of extreme behaviours, structures/routines, meltdowns etc had same assessment process as us however one professional disagreed with Autism diagnosis so he then had to go through some fast tracked assessment quite some time down the line. He ended up getting an Autism diagnosis in the end. I must admit one of the reliefs of the assessments being concluded and a decision made was we could now just enjoy him for who he is and not have to constantly assess and analyse what he was doing to feed back to all these professionals. 

In the early days it was a bit tricky - if he knew we were going to the park then that's all he would have in his head, that was the routine. If we got in the car and realised we needed petrol he would have a bit of a moment to himself as the routine was now all to pot as we were now going somewhere else before the park. My wife did an open Uni course on the subject of Autism and we've both spent countless hours researching the condition and educating ourselves on the various tips and tricks to help kids with Autism cope in life. Certain situations would make him anxious i.e. I took him to the football and it was too noisy for him so we had to leave after 10 minutes, tried again a season or two later with no joy. The lead up to going back to school after the holidays - what will my teacher be like? Where do I line up? What's the plan? what am I doing? I need to know!?, going places - right where we going? how long will be? are we going to any other places?. He also had some big sensory issues and was also advised he had hypermobility (apparently common in Autistic kids). Because of that he's never been as overly mobile as his peers and could appear quite stiff in his movements. 

However today, as a 10 year old, it's almost night and day from his earlier years. He attends a mainstream school, has minimal input from the Pupil Support Assistant, is academically at the level he should be for his age and routines can be chopped and changed with not much in the way of any issues. I think getting his diagnosis at such an early age has been a blessing as the school have then managed to put all relevant supports in place. The school he goes to is fantastic and really on the ball. He's made many friends and we can let him out and about on his own with kids in the street if he wants to. He'll sleep throughout the night (that's never been a problem) and whilst he will try a range of foods (if we push him) he would quite happily eat the same foods everyday if he could. Socially though there are some minor issues, I hear how other kids in his class converse with one another and can see a marked difference to how he would respond/communicate. He still has some ticks that he can't control such as extreme hand flapping when excited, facial grimmacing and spinning in a circle with his head tilted to the side.....but for whateve reason he appears to only do this at home. He doesn't do it at school or in public. It's almost as if he knows his house is his safe space to let out some of his bouts of energy with no judgement. We've had some family round from time to time make comments that it must be hard work bringing up an Autistic child but nothing could be farther from the truth (for us anyway). He's a piece of cake to parent and I put that down to the research and education we've done. It's now something ingrained in us when it comes to our parenting, we know the trigger signs if he's getting stressed/anxious and can put into place measures that help him. A simple "right son, you've got 5 minutes until we have to leave/go to bed/get yourself ready". He is a bit of a lazy sod at times, it's a mission to get him to shower himself or get himself ready so trying to teach him the importance of personal care and independence is something we're working on just now.

....and he's now a season ticket holder at the Rovers which is an incredibly proud father moment to see him sitting next to me, singing away and enjoying being at the football.

Oh God, I forgot about the excited hand flapping! There was a while when he would wiggle his elbows like he doing the funky chicken. He liked to line up his toy cars when he was wee too; got him an electric race track to send them spinning round, but he was never interested. Just liked to park them in rows, like he was tidying up. Hadn't thought about that in years.

He has hypermobility in his joints too; I'd no idea that was associated with ASD. We're going through an "I don't need to bathe" phase right now, which I somehow already knew might come at some point, but I'm sure plenty of parents of teenagers would recognise that.

This thread's really interesting. I've never had the opportunity to talk to parents of ASD kids; I feel like I'd have done a much better job with other people to discuss these things with. I'd certainly have twigged sooner about the reasoning behind certain behaviours.

[Richey Edwards]

3 minutes ago, BFTD said:

Oh God, I forgot about the excited hand flapping! There was a while when he would wiggle his elbows like he doing the funky chicken. He liked to line up his toy cars when he was wee too; got him an electric race track to send them spinning round, but he was never interested. Just liked to park them in rows, like he was tidying up. Hadn't thought about that in years.

He has hypermobility in his joints too; I'd no idea that was associated with ASD. We're going through an "I don't need to bathe" phase right now, which I somehow already knew might come at some point, but I'm sure plenty of parents of teenagers would recognise that.

This thread's really interesting. I've never had the opportunity to talk to parents of ASD kids; I feel like I'd have done a much better job with other people to discuss these things with. I'd certainly have twigged sooner about the reasoning behind certain behaviours.

I used to do that.  My parents had one of those big carpets with an ugly pattern on it. I used to line my toy cars up along the lines on the carpet.

10 minutes ago, EvilScotsman said:

My son (now 10) also has an ASD diagnosis; it was first suggested when he was at nursery at 4 (I think), and if memory serves the actual diagnosis followed fairly quickly. I do remember struggling to accept it for a while, but as many others have said it doesn't actually change who they are in any way. I also agree that the support available is night and day even from that which would have been available for @Richey Edwards when he was a nipper (not too long ago, either). My lad is in a mainstream school, though as a result of the layout (2 separate classes of 30 in each classroom) he can't cope with being in with the other kids too much. He has a lot of 1 to 1 time and they've been brilliant at communicating with us so we are on the same page with what happens at home and at school. I am in England though, so what others have said about their experiences with school is probably more relevant.

In terms of his behaviour, he'll have the occasional meltdown where he is uncontrollable, though it happens far less now than it used to. When it does occur, it's pretty much a case of making sure he doesn't hurt himself or anyone else until he comes out of it. We've been doing a lot of work (along with school) on using his words to express his feelings before he gets to the stage of losing his temper. He does struggle with loud noises (especially unexpected ones) and generally noisy environments, and his sleeping pattern can be frustrating.

By and large though, he's a lovely lad. He says he has "big feelings" which seems to me a pretty accurate description; his likes and dislikes are quite intense, and he can be very affectionate for a 10 year old boy. On the other hand, he can be quite vicious with his words and doesn't seem to quite get how much the things he says can hurt other people. He does have some inkling that he's different from other kids, but we haven't had the conversation yet; without wishing to hijack the thread, I'd be interested to know from others at what age they sat their kids down to discuss the diagnosis, and how they went about it?

Can You See Me (and its two follow ups) are very interesting reading; they're written by an teenage girl with ASD, in conjunction with a children's author. Also The Reason I Jump, which is written by a non-verbal austistic person, and I've just learned it was made into a film a couple of years ago.

Sounds familiar. My nickname used to be "Taz" after the Tasmanian Devil from the cartoons, because I used to go aff the heid if I was thwarted or if I perceived that people were taking the piss out of me. I had to do work on not losing my temper.

I don't know if this was a universal problem in all educational facilities, but in my old schools there was very much a "one size fits all" approach to educational support for people with difficulties. It was not child-centred in the slightest and did not teach you anything. It consisted of removing you from certain classes and letting you draw pictures or listen to tape books. There were countless children who could have achieved much more at school if someone had taken the time to teach them in ways they would have understood. Removing them from certain classes and letting them draw pictures and listen to audiobooks instead does not help them to deal with whatever they have difficulty with.

I wish you and your son well. I know that it can probably be difficult to have a child with ASD (I must have been a nightmare at times - although my parents would insist otherwise). I don't remember the exact time that my parents told me that I had Dyspraxia and was on the spectrum, but I did know when I was about 7 or 8 because I remember telling one of my teachers about it. I was buzzing because I thought it was some kind of Super Hero power, but it was not.

[BFTD]

4 minutes ago, EvilScotsman said:

He does have some inkling that he's different from other kids, but we haven't had the conversation yet; without wishing to hijack the thread, I'd be interested to know from others at what age they sat their kids down to discuss the diagnosis, and how they went about it?

I don't think we ever had a big conversation, as such. He was highlighted as likely on the spectrum when he was three, and monitored by nursery and school after that. When he was seven, we finally had an appointment with an educational psychologist who gave a firm diagnosis from the reports he'd been given and discussed it with us as a family.

He didn't seem bothered at the time, but I don't know how a kid can understand their differences at that age. He struggled with it more when he was around ten years old; we needed input from mental health services for a while, as he'd started some minor self-harming behaviours out of confusion and frustration. They arranged some sessions for us to talk to a psychologist, and it helped me to understand what was going on with him much better, and to do a better job of discussing it with him. He slowly improved in terms of happiness and functioning in the outside world from then on, thankfully.

It was always more a matter of trying to explain individual incidents or emotions and building an understanding from there. As he got older, he'd sometimes have problems at school, talk to the ASD advisor there, then come home and tell me about what had happened and why he thought he'd had issues with it. His high school has been a big help.

I wish I'd known a lot more earlier.

[Raithie]

1 hour ago, BFTD said:

Oh God, I forgot about the excited hand flapping! There was a while when he would wiggle his elbows like he doing the funky chicken. He liked to line up his toy cars when he was wee too; got him an electric race track to send them spinning round, but he was never interested. Just liked to park them in rows, like he was tidying up. Hadn't thought about that in years.

He has hypermobility in his joints too; I'd no idea that was associated with ASD. We're going through an "I don't need to bathe" phase right now, which I somehow already knew might come at some point, but I'm sure plenty of parents of teenagers would recognise that.

This thread's really interesting. I've never had the opportunity to talk to parents of ASD kids; I feel like I'd have done a much better job with other people to discuss these things with. I'd certainly have twigged sooner about the reasoning behind certain behaviours.

Oh wow, you've literally described same kid to mines  Ours still does the funky chicken dance (if a song comes on and we ask him to dance - it's the chicken dance he'll do) and like yours the "I don't need a bath/shower" has been the case for a while. we moved house a couple of years ago. Our previous house had a bath with overhead shower whereas our new house only has a shower. Used to have no issues getting him in the bath as for the most part he could have a play at the same time. He was always a bit iffy having just a shower but the sensation/sensory feeling of a shower can be difficult for Autistic kids. He's getting used to it and we're now trying to get him to shower/dry himself. A mission and a half but generally he can't be arsed with it, he finds it a chore but he's getting there. Trying to promote his independence as he's getting to that age so giving him the opportunity to pick his own clothes and do things for himself (probably something we should have encouraged earlier rather than doing everything for him). Even wee things like his pals coming to the door, we're telling him to go and answer it and get used to these conversations. If we go to a shop and there's something he's after but not there (in most cases it's Match Attax football cards) we're telling him to go and ask a staff member for some help with us hanging back. We wrapped him up in cotton wool for so long it's time we let him off the leash a wee bit and experience certain social situations. Again it's probably sensory but even a minor bump or fall can be the end of the world for him and god forbid he grazes he knee. Had umpteen calls from the school saying he's on deaths door after tripping up in the playground and once he's home it's like there's heehaw wrong with him.

2 hours ago, EvilScotsman said:

without wishing to hijack the thread, I'd be interested to know from others at what age they sat their kids down to discuss the diagnosis, and how they went about it?

We were swithering about whether to tell our son or not seeing as he was shown a lot of improvements as the years went on. The school also respected our wishes not to mention it to him and he's never queried why he was getting some additional support in class or even questioned any of his emotions/feelings in his day to day life (we can however tell when something is on his mind and if asked he will open up). I think we were worried he would feel he has a label which we didn't want. However we've only just, a few months ago, spoke to our son about it. He's obsessed with Strongman and the Worlds Strongest Man is a boy called Tom Stoltman from Scotland and he is Autistic. He's very open about it and a big advocate about not letting being Autistic hold you back in life. Understandably we've taken a shine to Tom as well and we're going to meet him at one of the Strongman shows at the Hydro in October - needless to say my son, and us, are buzzing. Funnily enough it was our son who brought up the topic having watched countless YouTube videos on Tom and him speaking about Autism and what it meant. Our son himself had said they shared some similarities. Gently approached the subject for a bit, probably tripping on eggshells at times in terms of how we put it across, and this was his reaction:

Son: "So I'm Autistic? oh well.....anyway, what's for tea?"

He's never mentioned it again or shown any sign of this playing on his mind. The good thing is, as his parents, we have such a close bond with him that he'll generally tell us anything and won't keep things hidden. If this was playing on his mind we'd know but he seems absolutely fine.

[BFTD]

3 minutes ago, Raithie said:

Oh wow, you've literally described same kid to mines  Ours still does the funky chicken dance (if a song comes on and we ask him to dance - it's the chicken dance he'll do) and like yours the "I don't need a bath/shower" has been the case for a while. we moved house a couple of years ago. Our previous house had a bath with overhead shower whereas our new house only has a shower. Used to have no issues getting him in the bath as for the most part he could have a play at the same time. He was always a bit iffy having just a shower but the sensation/sensory feeling of a shower can be difficult for Autistic kids. He's getting used to it and we're now trying to get him to shower/dry himself. A mission and a half but generally he can't be arsed with it, he finds it a chore but he's getting there. Trying to promote his independence as he's getting to that age so giving him the opportunity to pick his own clothes and do things for himself (probably something we should have encouraged earlier rather than doing everything for him). Even wee things like his pals coming to the door, we're telling him to go and answer it and get used to these conversations. If we go to a shop and there's something he's after but not there (in most cases it's Match Attax football cards) we're telling him to go and ask a staff member for some help with us hanging back. We wrapped him up in cotton wool for so long it's time we let him off the leash a wee bit and experience certain social situations. Again it's probably sensory but even a minor bump or fall can be the end of the world for him and god forbid he grazes he knee. Had umpteen calls from the school saying he's on deaths door after tripping up in the playground and once he's home it's like there's heehaw wrong with him.

Yeah, my boy's always hated showers. I don't think he really even knows why; could be sensory, or it might just be that he spent the first seven or eight years having baths and it's just too different. That all sounds very similar; I used to take him with me to the Recs when he was tiny, but he got put off football after being (accidentally) hit on the back of the head with a ball in the playground. He's just started coming with me again this season, and the playground incident was so traumatic to him that he brought it up again during a game. Must be about a decade later; I remember him telling me at the time. I think he just couldn't understand how the universe could be so cruel, poor wee man  

[Jacksgranda]

2 hours ago, BFTD said:

I don't think we ever had a big conversation, as such. He was highlighted as likely on the spectrum when he was three, and monitored by nursery and school after that. When he was seven, we finally had an appointment with an educational psychologist who gave a firm diagnosis from the reports he'd been given and discussed it with us as a family.

He didn't seem bothered at the time, but I don't know how a kid can understand their differences at that age. He struggled with it more when he was around ten years old; we needed input from mental health services for a while, as he'd started some minor self-harming behaviours out of confusion and frustration. They arranged some sessions for us to talk to a psychologist, and it helped me to understand what was going on with him much better, and to do a better job of discussing it with him. He slowly improved in terms of happiness and functioning in the outside world from then on, thankfully.

It was always more a matter of trying to explain individual incidents or emotions and building an understanding from there. As he got older, he'd sometimes have problems at school, talk to the ASD advisor there, then come home and tell me about what had happened and why he thought he'd had issues with it. His high school has been a big help.

I wish I'd known a lot more earlier.

Stop putting yourself down - you did the best you could with what you had/knew, same as the rest of us.

 

[RH33]

9 hours ago, Richey Edwards said:

I am "neurodivergent". I am Dyspraxic and also on the Autistic spectrum. I am 32 years old today, and have had people talk down to me and tell me that I would never amount to anything because I am too stupid and too different.

Here are examples of things I have struggled with at various stages, and how they were resolved/dealt with.

1. Tying shoelaces. I learned how to do this using the "bunny ears" method. I still use this method to tie my laces.

2. Riding a bike. I did not learn how to ride a bike until I was about ten. This was partly due to the balance issues of Dyspraxia, but a big part of this was confidence. I was frightened of falling off the bike and hurting myself. Once I got over this fear it was easy though.

3. Mathematics. I struggled with anything more complicated than addition and subtraction, and even at that I often double-check and triple-check that I have correctly worked sums out. I was good at other school subjects but always struggled with maths, and was often in the lowest maths group. My university course required me to sit a pre-entry mathematics exam, so I had to basically teach myself how to do maths in order to prepare for this. I have managed to get the hang of them though, and I sit regular numeracy tests at university and have got full marks for all of them. No one at school had ever gone through how to actually do equations etc with me, and I would have done better at school if someone had done that.

4. Social skills - I don't always say or do the "socially acceptable" thing in situations, and I dislike situations that involve engaging with a lot of people who I do not know. This is something that has improved as I have got older though.

5. New routines - I am a creature of routine and do not like it when that routine is disrupted. I like to plan things and get anxious when things don't work out how I thought they would or how I wanted them to. I realise that unforeseen things happen, and it's important to stay calm and deal with them and not get anxious about things that I cannot control. I cannot control external events, but I can control how I am going to react to them.

 

I was told by various people that I would never be able to hold a responsible job, or go to university to become a mental health nurse, or drive a car because my condition made me a "liability". I have done all of those things that I was told that I would never be able to do. Not bad for someone who was called "a spastic" and "a retard" by certain people.

 

The absolute best thing that can be done for your grand-daughter is that she is given love, respect and acceptance as she grows up. A diagnosis can provide an explanation, but a diagnosis does not define who she is. With the right support and guidance, the diagnosis will not prevent her from growing up to be who she wants to be and do what she wants to do.

 

Anyway, I have rambled on. I hope at least a little bit of what I have said has been useful. I wish your grand-daughter, your family and yourself the very best.

 

Best wishes,

Jamie

Richey, you've summed up a lot of what two of mine struggle with. Neither can tie shoe laces. My daughter has had swimming lessons since she was 2.5 and at 9.5 still can't. Maths seems be both her and brothers stronger side.

My daughter struggles a lot with emotional regulation and concentration. 

Son had bowel.control issues until he was 11 and daughter on medication for bladder.

I don't want to hijack autism thread but dyspraxia is not a condition that's well recognised. 

You've done amazingly well this year, can't believe that's you finished first year!

[Richey Edwards]

1 minute ago, RH33 said:

Richey, you've summed up a lot of what two of mine struggle with. Neither can tie shoe laces. My daughter has had swimming lessons since she was 2.5 and at 9.5 still can't. Maths seems be both her and brothers stronger side.

My daughter struggles a lot with emotional regulation and concentration. 

Son had bowel.control issues until he was 11 and daughter on medication for bladder.

I don't want to hijack autism thread but dyspraxia is not a condition that's well recognised. 

You've done amazingly well this year, can't believe that's you finished first year!

I forgot to say that I also struggled with swimming. As in, I was in a swimming class aimed at beginners when I was 10 and was the oldest there.

And driving. It took me a lot of practice to develop the skills to sit my test. I passed first time though.

 

This is the method I use to tie my laces. Your kids might find that easier.

[s_dog]

Really interesting thread. And it's a great read showing how different people with autism can be, despite many sharing some quite similar behaviours. For Crazy Days, just think that getting a proper diagnosis as a good thing, as it'll help with getting any additional support put in place for your grand-daughter with her education, allow her to flourish, and be the best person she can be.

I'm not an expert, but I always remember working with a guy who struggled to support someone with autism because he said he couldn't understand him. But it's not really about understanding why someone behaves in certain ways, it's knowing they are neurodivergent and  just learning what works and doesn't work for them, and then learning how to either avoid or minimise the problems. 

 BFTD don't beat yourself up for not knowing more earlier as you said, autism is such a complex condition, and even health professionals that know a bit about it can struggle.

[Boo Khaki]

1 hour ago, Richey Edwards said:

I forgot to say that I also struggled with swimming. As in, I was in a swimming class aimed at beginners when I was 10 and was the oldest there.

And driving. It took me a lot of practice to develop the skills to sit my test. I passed first time though.

 

This is the method I use to tie my laces. Your kids might find that easier.

Somebody needs to point oot to the daft boot you are meant to put your shoes on before you tie the laces.

[Replays]

On 10/08/2022 at 16:02, Crazy Days said:

8 yr old grand-daughter has just been diagnosed as being autistic and waiting on further results if she has ADHD or learning disability.  News was a kick in the balls and finding it hard to get the head round. She was born very premature and had a slight bleed on the brain but seemed normal.  Knew there was some degree of difficulty in her concentrating in the class room.

Concerns were raised and a private assessment has confirmed she is autistic and may be medium in the spectrum. Have no idea what her future may hold although she may need to go to specialist learning. She holds conversations etc well as far as we can see and appears bright enough, although there are issues with her eating lots of different food.

Really have no idea what all of this means.

Anyone with any similar knowledge or advice would be gratefully received.

My big brother (and I’m sure he won’t mind me saying this) posts on here and his experiences and career may be of benefit to you if you, your family and/or your granddaughter require any support or advice. 13 years on from receiving his diagnosis in his late teens, he continues to make us all very proud.

His handle is @Autistisches Nilpferd and if you drop him a message I’m sure he’d be happy to chat.

[Crazy Days]

6 hours ago, Scott-Replay said:

My big brother (and I’m sure he won’t mind me saying this) posts on here and his experiences and career may be of benefit to you if you, your family and/or your granddaughter require any support or advice. 13 years on from receiving his diagnosis in his late teens, he continues to make us all very proud.

His handle is @Autistisches Nilpferd and if you drop him a message I’m sure he’d be happy to chat.

Many thanks have passed this on to my daughter.