Autism

[ClaphamFox]

Inspired by the 'Sensory rooms' thread on the main forum, plus a few DMs with another poster, I thought I'd start a thread for anybody who wishes to discuss anything related to autism. 

 

I'll start. Just over a year ago, my partner and I began to suspect that our son might be on the spectrum. This came as a surprise to us as his vocabulary was good and he'd hit all of his developmental milestones until around three. He'd always been a bit challenging in terms of sleep and emotional regulation, but he seemed 'normal' in other ways so we didn't worry too much. Then when other children his age started to be more social and have back-and-forth conversations, we noticed that our son was really struggling to use his language in a social/pragmatic way, which was isolating him from his peers. We consulted his nursery, doctors and various therapists, and they all basically told us they think he's on the spectrum, although he hasn't been diagnosed yet.

 

A year later, his communication skills have improved a lot and continue to get better all the time, but he finds back-and-forth conversation tricky unless it's with me or his mum. He still faces a challenge in regulating his emotions - most of the time he's very happy, but if something upsets him it REALLY upsets him, and it can be difficult to make him feel better. Sometimes he can be very 'stimmy' - making strange noises, running up and down, waving his arms  - while other times he can be very calm, relaxed and talkative. So far, he doesn't seem to have major sensory issues and is quite happy in crowded/noisy places.

 

Our son was due to begin school in September but we've held him back a year because he would have been one of the youngest in his year as well as having additional needs, and we were worried that he'd be overwhelmed in a class of 30. He is now coming on really well at nursery (with help from his therapists) and we feel confident he'll be ready for school next September, when he'll have just turned five. The major challenge/choice we have now is finding the right school for him. My partner does not like the local state primary - our son attended the nursery attached to the school for a while and our experience of them was not positive - so we're casting the net for an alternative school. This is occupying a great deal of our time and thoughts at the moment.

Anyway, that's a brief summary of my situation. I'd love to hear the experiences of anybody else who wants to share them...

 

 

[foxy boxing]

I was diagnosed with Aspergers in my 40's but have felt "different" all my life. I should have been diagnosed at school age but for whatever reason I wasn't and then I left school for the adult world and really struggled. I eventually got a full time job with an understanding boss and Co workers but I still find friendships and relationships really difficult. I go to an Aspergers/ autism group which meets every week to socialze with people  on the spectrum. We do a number of different activities and the people who go have varying degrees of autism/aspergers and it has really helped me and others who go there. It is a very lonely life having Aspergers/ autism and any interaction is great but stressful.

[ClaphamFox]

10 minutes ago, foxy boxing said:

I was diagnosed with Aspergers in my 40's but have felt "different" all my life. I should have been diagnosed at school age but for whatever reason I wasn't and then I left school for the adult world and really struggled. I eventually got a full time job with an understanding boss and Co workers but I still find friendships and relationships really difficult. I go to an Aspergers/ autism group which meets every week to socialze with people  on the spectrum. We do a number of different activities and the people who go have varying degrees of autism/aspergers and it has really helped me and others who go there. It is a very lonely life having Aspergers/ autism and any interaction is great but stressful.

Thanks a lot for sharing that, foxy boxing. I'm sorry that you've struggled and that your diagnosis came so late. I'm glad the Aspergers/autism group is proving helpful. 

 

I'm just really starting to learn about all this, so hearing from somebody who is on the spectrum is really helpful - thanks.

[MPH]

@ClaphamFox first off very well done on getting therapists on board so early. That’s going to be a HUGE benefit to your son and with every communication we have made every Drs appointment and every testament of every Facebook group I have seen they have all said the same thing- the earlier you can get any kind of support for your child on the spectrum, the better it is for them.

 

 

getting an official diagnoses will  not change anything about your son BUT along the same lines as mentioned it WILL help your son get a special educational needs statement and will therefore help him get the help he needs in school- schools can be particularly unhelpful ( maybe their hands are tied?) with regards to supporting someone, If there is nothing saying they should. 
 

my sister really questioned me on why I would want an official diagnoses of Autism spectrum for my son  and I just explained it was for the reason mentioned above. It doesn’t change a thing other than get him the support he needs.

 

i will say that in some ways ( maybe different where you are) it’s super difficult to get someone newly statemented straight into  a special needs school/ unit. It can often take a year of them struggling before the current school will recommend he needs that additional support. Sounds cruel to me, but I get it.

 

 

my only advice to you is don’t ever stop advocating and ‘ fighting’ for your son. Don’t be a Raving lunatic about it stomping your fists on tables, (seen it done!) but don’t let anyone tell you they know your son better than you do. Some ‘professionals’ can be very condescending and patronizing. rise above it! Yes listen to their advice but be discerning about what you are being told.   
 

i also had family members try say ‘ there ain’t nothing wrong with him!’ ( i resented with joe they phrased that but that’s another story lol).

 

just remember that not everyone gets to see what you see. No one else is there 24/7.

 

 

keep us all informed with how you get on. It sounds like I’m about 3-4 years further down the line than you are!

[MPH]

1 hour ago, foxy boxing said:

I was diagnosed with Aspergers in my 40's but have felt "different" all my life. I should have been diagnosed at school age but for whatever reason I wasn't and then I left school for the adult world and really struggled. I eventually got a full time job with an understanding boss and Co workers but I still find friendships and relationships really difficult. I go to an Aspergers/ autism group which meets every week to socialze with people  on the spectrum. We do a number of different activities and the people who go have varying degrees of autism/aspergers and it has really helped me and others who go there. It is a very lonely life having Aspergers/ autism and any interaction is great but stressful.

 

i have 3 cousins who have aspergers and I know their struggles- I’m sorry it’s been tough for you too!

 

 

you can let us know in here if you’ve had a difficult day! You’ll find people who understand!

[Leicesterpool]

I have aspergers myself was diagnosed in 2007, remember it was halloween evening of all times  and Leicester lost 3-4 to Chelsea in the league cup.

 

It's condition that certainly makes life interesting shall we say, but I feel with the right support from others and encouragement then I feel you can go to great things. I would say the support now is better than what was over ten years ago. Schooling was a issue. 

[rachhere]

@ClaphamFox- glad to hear you met with professionals who took your concerns seriously. There’s some great schools out there-  I am sure you will find the right one. Have you looked at the possibility of getting an EHCP to then be able to state the particular school you would like him to attend?

 

My husband is pretty confident he has aspergers. He doesn’t struggle especially socially, but functioning in the workplace is a real challenge. He’s super intelligent and effective at a lot of things, but he massively struggles with information overload, not having clear instructions and organisation in general. If anyone has any strategies for the workplace I am sure he would appreciate them! 

[ALC Fox]

2 hours ago, MPH said:

@ClaphamFox first off very well done on getting therapists on board so early. That’s going to be a HUGE benefit to your son and with every communication we have made every Drs appointment and every testament of every Facebook group I have seen they have all said the same thing- the earlier you can get any kind of support for your child on the spectrum, the better it is for them.

 

 

getting an official diagnoses will  not change anything about your son BUT along the same lines as mentioned it WILL help your son get a special educational needs statement and will therefore help him get the help he needs in school- schools can be particularly unhelpful ( maybe their hands are tied?) with regards to supporting someone, If there is nothing saying they should. 
 

my sister really questioned me on why I would want an official diagnoses of Autism spectrum for my son  and I just explained it was for the reason mentioned above. It doesn’t change a thing other than get him the support he needs.

 

i will say that in some ways ( maybe different where you are) it’s super difficult to get someone newly statemented straight into  a special needs school/ unit. It can often take a year of them struggling before the current school will recommend he needs that additional support. Sounds cruel to me, but I get it.

 

 

my only advice to you is don’t ever stop advocating and ‘ fighting’ for your son. Don’t be a Raving lunatic about it stomping your fists on tables, (seen it done!) but don’t let anyone tell you they know your son better than you do. Some ‘professionals’ can be very condescending and patronizing. rise above it! Yes listen to their advice but be discerning about what you are being told.   
 

i also had family members try say ‘ there ain’t nothing wrong with him!’ ( i resented with joe they phrased that but that’s another story lol).

 

just remember that not everyone gets to see what you see. No one else is there 24/7.

 

 

keep us all informed with how you get on. It sounds like I’m about 3-4 years further down the line than you are!

100% agree, especially with the bits in bold.

 

I have a member of my close family who was misdiagnosed as a young child and then diagnosed way, way too late, basically when it was crisis time. So getting that early diagnosis will open up a lot of things to help your son, @ClaphamFox, as he goes through school and into adulthood.

 

I will also add that, through conversations with some professionals as part of a crisis team, they basically said that, unfortunately, often it's the pushier parents who more often manage to get things done for their kids more quickly. So, if you think that you're waiting too long for a certain diagnosis, or for a decision on funding for specialist help, or the council/local authority is dragging their feet in terms of helping you find specialist education (if your son ever needs it), or anything similar, then keep at it. No need to go overboard as @MPH says, but keep pushing.

 

Best wishes to you, your son and your family 

[jonthefox]

My son is 16 and has been diagnosed as Autistic since he was 5. In that time we've gone from trying to eat his bedclothes to a young man who has recently passed his  Duke of Edinburgh award , passed his National citizen award and started mainstream college. He takes a lot of time and effort but the rewards will be some of the greatest experiences of your life. Remember , Different doesn't mean broken. 

[Tim'llFixIt]

Hey mate, I'm a teacher and have a fair bit of experience with autism in young children, any questions you want to bounce off me about anything regarding mainstream and private education feel free to pop them in here (they might help lurkers too) and I'll do my best to answer

Edited 2 November 2021 by Tim'llFixIt

[tw511]

Hi, I'm a long-time lurker on here, but never felt compelled to post before. This topic piqued my interest, I'd like to share my own experience which seems similar to other posts on here.

 

My son is 4 now. He was always bit behind with early milestones (sitting up, crawling, walking). He always got there in the end with most things, but speech and language stalled very early (as a baby he babbled and made slow progress). We used to live in Oxford  and the support there was frankly useless. The nursery he was at were slow to pick up on there being a problem, the first room he was in there said everything was fine. He then changed rooms and we got hauled in (as if before the headmaster) and told he was now tracking way behind on everything. We were made to feel like it was our fault and our problem, they offered no suggestions/plans going forward . The healthcare visitors in Oxford were also very hand-wavey, saying to 'wait and see' and 'he'll probably catch up'. We were very worried, but being first time parents, we didn't know any better and sort of went along with it, which I bitterly regret now with the power of hindsight.

 

In late 2019 we moved to Sheffield (the cost of living was unsustainable in Oxford and we'd be hankering for a while for a move up north) and it has been like night and day in terms of support. After a while we got him in a nursery again and they have been amazing, very good SEND support and plans which have seen him make some (admittedly slow) progress.  They've been very good at pulling in the various support services in the region and pulling together a My Plan portfolio. We have no official diagnosis yet, we have been on the waiting list for assessment for over a year which is unfortunately the norm. As others have stated, an official label doesn't change anything, but does help getting the support he needs going forwards.

 

He was due, to start mainstream school the September just gone. However upon consideration, and talking with the school, we didn't think he would have the support he needed, so decided to keep him at nursery (where he is really happy) for another year. We did an EHCP application in conjunction with nursery, 0-5 SEND and others, in order to have in place the support he needs at school in the future. We were delighted to recently be approved for an EHCP after it went before the panel, especially as 9 out of 10 applications are rejected on the first attempt. We think the support and evidence from nursery was fundamental in this, as lack of evidence is the main fail criteria apparently. We now need to wait (until Feb I think) for the panel's suggestion on a school placement. We have stated a preference for an Integrated Resource school, we considered a true specialised setting but feel he models really well from his peers (and little sister!) so being around children with a broader range of abilities may be beneficial to him. Unfortunately though, the final decision isn't ours, he could get placed in a mainstream school but with more support in place, we will have to wait and see.

 

He is largely non-verbal, not potty trained (a great source of anxiety, but impossible to implement currently). He is generally a happy boy and quite laid back, but struggles to control his emotions and can have 'melt-downs' if overwhelmed or triggered by something (sometimes it's unclear to us exactly what). He can communicate with pointing, taking our hand and guiding us and single words for a rare few things. Support from nursery etc has been good, but we don't get huge amounts elsewhere, my wife's family are in Wales and we don't see them much. Mine are in North West Leicestershire (so not too far) but with Covid and everything we've barely seen them recently. Relations have gotten a little strained lately for reasons I won't go in to. It can feel tough and a bit lonely at times. People mean well, but when they suggest things like 'he might get better eventually' and 'he'll catch up at some point', it is quite upsetting, treating him like he has a disease that can be cured rather than embracing him for who he is and getting to know him properly. I do understand it can be difficult to take in as you have to fundamentally change your approach to interaction, and for us as parents we are still learning and a bit clueless at times.

 

I do often wonder about myself too as I struggle massively with social interaction (and always have) but that is an entirely different subject.

 

I thought I'd share my experiences in case it helps anyone in some way, and it's nice to share and take a burden off sometimes. For us it's been a very steep learning curve, but we are getting there. Much still to learn going forwards though! Sorry for the long post.

[ClaphamFox]

2 hours ago, tw511 said:

Hi, I'm a long-time lurker on here, but never felt compelled to post before. This topic piqued my interest, I'd like to share my own experience which seems similar to other posts on here.

 

My son is 4 now. He was always bit behind with early milestones (sitting up, crawling, walking). He always got there in the end with most things, but speech and language stalled very early (as a baby he babbled and made slow progress). We used to live in Oxford  and the support there was frankly useless. The nursery he was at were slow to pick up on there being a problem, the first room he was in there said everything was fine. He then changed rooms and we got hauled in (as if before the headmaster) and told he was now tracking way behind on everything. We were made to feel like it was our fault and our problem, they offered no suggestions/plans going forward . The healthcare visitors in Oxford were also very hand-wavey, saying to 'wait and see' and 'he'll probably catch up'. We were very worried, but being first time parents, we didn't know any better and sort of went along with it, which I bitterly regret now with the power of hindsight.

 

In late 2019 we moved to Sheffield (the cost of living was unsustainable in Oxford and we'd be hankering for a while for a move up north) and it has been like night and day in terms of support. After a while we got him in a nursery again and they have been amazing, very good SEND support and plans which have seen him make some (admittedly slow) progress.  They've been very good at pulling in the various support services in the region and pulling together a My Plan portfolio. We have no official diagnosis yet, we have been on the waiting list for assessment for over a year which is unfortunately the norm. As others have stated, an official label doesn't change anything, but does help getting the support he needs going forwards.

 

He was due, to start mainstream school the September just gone. However upon consideration, and talking with the school, we didn't think he would have the support he needed, so decided to keep him at nursery (where he is really happy) for another year. We did an EHCP application in conjunction with nursery, 0-5 SEND and others, in order to have in place the support he needs at school in the future. We were delighted to recently be approved for an EHCP after it went before the panel, especially as 9 out of 10 applications are rejected on the first attempt. We think the support and evidence from nursery was fundamental in this, as lack of evidence is the main fail criteria apparently. We now need to wait (until Feb I think) for the panel's suggestion on a school placement. We have stated a preference for an Integrated Resource school, we considered a true specialised setting but feel he models really well from his peers (and little sister!) so being around children with a broader range of abilities may be beneficial to him. Unfortunately though, the final decision isn't ours, he could get placed in a mainstream school but with more support in place, we will have to wait and see.

 

He is largely non-verbal, not potty trained (a great source of anxiety, but impossible to implement currently). He is generally a happy boy and quite laid back, but struggles to control his emotions and can have 'melt-downs' if overwhelmed or triggered by something (sometimes it's unclear to us exactly what). He can communicate with pointing, taking our hand and guiding us and single words for a rare few things. Support from nursery etc has been good, but we don't get huge amounts elsewhere, my wife's family are in Wales and we don't see them much. Mine are in North West Leicestershire (so not too far) but with Covid and everything we've barely seen them recently. Relations have gotten a little strained lately for reasons I won't go in to. It can feel tough and a bit lonely at times. People mean well, but when they suggest things like 'he might get better eventually' and 'he'll catch up at some point', it is quite upsetting, treating him like he has a disease that can be cured rather than embracing him for who he is and getting to know him properly. I do understand it can be difficult to take in as you have to fundamentally change your approach to interaction, and for us as parents we are still learning and a bit clueless at times.

 

I do often wonder about myself too as I struggle massively with social interaction (and always have) but that is an entirely different subject.

 

I thought I'd share my experiences in case it helps anyone in some way, and it's nice to share and take a burden off sometimes. For us it's been a very steep learning curve, but we are getting there. Much still to learn going forwards though! Sorry for the long post.

Don't apologise! This is a great post, and very useful to hear. You're in a very similar situation to me in that your son is the same age and you've also decided to delay his entry into reception. I was immediately struck by your comments about Oxford - we moved to just outside of Oxford last December and, yes, the local authorities have been pretty useless! We've had problems with some of the people assigned to us (their arrogance can be breathtaking at times) and had to request that one woman in particular was replaced (which, to be fair, they did straight away). 

 

We don't have an EHCP yet (the application is in) and have been warned that the chances of rejection are high. The main reason we want one is the increased flexibility over school choices it will give us rather than the help it will provide (Oxfordshire is notoriously stingy in this regard). My partner has spoken to practically every state and private school in Oxfordshire and we're still agonising over that decision. I look forward to the day we have clarity over that.

 

I sympathise with your personal situation. My other half has nothing to do with her family, although we see my family (who reside in Leicester) very frequently. One of the strangest things has been telling friends that our son is probably on the spectrum - some are brilliant and completely unfazed, while others react with horror as if he's got a terminal illness. It's actually quite funny at times...

 

[Scotch]

My daughter is just under two and a half and we have a hunch that once she is old enough to be diagnosed (I'm of the understanding she may be way too young to tell?) she may end up being on the spectrum. 

 

My Mrs has always been more convinced than I am due to her being slower to hit landmarks than her previous two kids. Particularly speech and physical landmarks, rolling over sitting up etc. She is also extremely sensitive to loud noises and does the "hand flapping" thing quite often. 

 

On the other hand, I've always been more sceptical due to certain things she does that seem very UN-autistic. For example, she's always made a lot of eye contact when communicating but in particular, she's always seemed very emotionally intelligent. Even from a very young age, she could pick up on emotions easily.

 

She has always struggled to interact with children her own age and doesn't seem to keen too either but due to her age and the timing of lockdowns, she was never really given that opertunity to do so, so we've recently put her into a childminders for a couple of hours a week purely to let her socialize (she's too young for nursery). Also, there is no doubting that her speech is not where it should be so we got a speech therapist but she isn't worried due to the fact that although her vocabulary is SLIGHTLY limited, she is very good at interacting and communicating in other ways. 

 

We are just at an awkward point where we can't know either way but regardless of her being on the spectrum or not, we are just trying to address the things we can now. 

[FoxyPV]

My son is ASD. 

 

Re. The stimming, he finds blu tack really useful and you can really get into it, it's not noisy and has a good consistency / texture. 

 

We've been fortunate that he has really loved and thrived in school and his friends just accept for him for who he is (I.e. when he can't talk to new people etc)

 

The biggest thing for us has been maintaining a decent routine with any changes signposted way in advance.

 

He asks loads of questions that would appear cheeky but as ASD people have difficulty with imaging the future / filling in some blanks, these are more clarification questions and whilst testing at times, it is just one of those things.

 

Judo is really good for ASD kids. 

[Buce]

18 minutes ago, Scotch said:

My daughter is just under two and a half and we have a hunch that once she is old enough to be diagnosed (I'm of the understanding she may be way too young to tell?) she may end up being on the spectrum. 

 

My Mrs has always been more convinced than I am due to her being slower to hit landmarks than her previous two kids. Particularly speech and physical landmarks, rolling over sitting up etc. She is also extremely sensitive to loud noises and does the "hand flapping" thing quite often. 

 

On the other hand, I've always been more sceptical due to certain things she does that seem very UN-autistic. For example, she's always made a lot of eye contact when communicating but in particular, she's always seemed very emotionally intelligent. Even from a very young age, she could pick up on emotions easily.

 

She has always struggled to interact with children her own age and doesn't seem to keen too either but due to her age and the timing of lockdowns, she was never really given that opertunity to do so, so we've recently put her into a childminders for a couple of hours a week purely to let her socialize (she's too young for nursery). Also, there is no doubting that her speech is not where it should be so we got a speech therapist but she isn't worried due to the fact that although her vocabulary is SLIGHTLY limited, she is very good at interacting and communicating in other ways. 

 

We are just at an awkward point where we can't know either way but regardless of her being on the spectrum or not, we are just trying to address the things we can now. 

 

Autism isn't a one-size-fits-all condition, so it's not unusual that your daughter doesn't tick all the boxes; in fact, I think even most neuro-typical people would tick a box or two.

 

I would say that the slow development, sensitivity to noise, and particularly the hand-flapping are strong indicators, though.

[Strokes]

5 hours ago, tw511 said:

Hi, I'm a long-time lurker on here, but never felt compelled to post before. This topic piqued my interest, I'd like to share my own experience which seems similar to other posts on here.

 

My son is 4 now. He was always bit behind with early milestones (sitting up, crawling, walking). He always got there in the end with most things, but speech and language stalled very early (as a baby he babbled and made slow progress). We used to live in Oxford  and the support there was frankly useless. The nursery he was at were slow to pick up on there being a problem, the first room he was in there said everything was fine. He then changed rooms and we got hauled in (as if before the headmaster) and told he was now tracking way behind on everything. We were made to feel like it was our fault and our problem, they offered no suggestions/plans going forward . The healthcare visitors in Oxford were also very hand-wavey, saying to 'wait and see' and 'he'll probably catch up'. We were very worried, but being first time parents, we didn't know any better and sort of went along with it, which I bitterly regret now with the power of hindsight.

 

In late 2019 we moved to Sheffield (the cost of living was unsustainable in Oxford and we'd be hankering for a while for a move up north) and it has been like night and day in terms of support. After a while we got him in a nursery again and they have been amazing, very good SEND support and plans which have seen him make some (admittedly slow) progress.  They've been very good at pulling in the various support services in the region and pulling together a My Plan portfolio. We have no official diagnosis yet, we have been on the waiting list for assessment for over a year which is unfortunately the norm. As others have stated, an official label doesn't change anything, but does help getting the support he needs going forwards.

 

He was due, to start mainstream school the September just gone. However upon consideration, and talking with the school, we didn't think he would have the support he needed, so decided to keep him at nursery (where he is really happy) for another year. We did an EHCP application in conjunction with nursery, 0-5 SEND and others, in order to have in place the support he needs at school in the future. We were delighted to recently be approved for an EHCP after it went before the panel, especially as 9 out of 10 applications are rejected on the first attempt. We think the support and evidence from nursery was fundamental in this, as lack of evidence is the main fail criteria apparently. We now need to wait (until Feb I think) for the panel's suggestion on a school placement. We have stated a preference for an Integrated Resource school, we considered a true specialised setting but feel he models really well from his peers (and little sister!) so being around children with a broader range of abilities may be beneficial to him. Unfortunately though, the final decision isn't ours, he could get placed in a mainstream school but with more support in place, we will have to wait and see.

 

He is largely non-verbal, not potty trained (a great source of anxiety, but impossible to implement currently). He is generally a happy boy and quite laid back, but struggles to control his emotions and can have 'melt-downs' if overwhelmed or triggered by something (sometimes it's unclear to us exactly what). He can communicate with pointing, taking our hand and guiding us and single words for a rare few things. Support from nursery etc has been good, but we don't get huge amounts elsewhere, my wife's family are in Wales and we don't see them much. Mine are in North West Leicestershire (so not too far) but with Covid and everything we've barely seen them recently. Relations have gotten a little strained lately for reasons I won't go in to. It can feel tough and a bit lonely at times. People mean well, but when they suggest things like 'he might get better eventually' and 'he'll catch up at some point', it is quite upsetting, treating him like he has a disease that can be cured rather than embracing him for who he is and getting to know him properly. I do understand it can be difficult to take in as you have to fundamentally change your approach to interaction, and for us as parents we are still learning and a bit clueless at times.

 

I do often wonder about myself too as I struggle massively with social interaction (and always have) but that is an entirely different subject.

 

I thought I'd share my experiences in case it helps anyone in some way, and it's nice to share and take a burden off sometimes. For us it's been a very steep learning curve, but we are getting there. Much still to learn going forwards though! Sorry for the long post.

Has he had a hearing test?

My boy suffered similarly but maybe not quite to the same extremity and he had gromit’s fitted  aged 6 and things improved massively.

He is now in high school and is doing well but the catch up was hard having not realised for so long he was very hard of hearing.

Hope you find a way forward and get him the support he needs.

[Rain King]

6 minutes ago, Strokes said:

Has he had a hearing test?

My boy suffered similarly but maybe not quite to the same extremity and he had gromit’s fitted  aged 6 and things improved massively.

He is now in high school and is doing well but the catch up was hard having not realised for so long he was very hard of hearing.

Hope you find a way forward and get him the support he needs.

Exactly the same, my boy was suspected of being on the scale as he struggled lots up to the age of 5. Turns out he suffered terribly with glue ear which caused significant developmental delays.

[tw511]

2 minutes ago, Strokes said:

Has he had a hearing test?

My boy suffered similarly but maybe not quite to the same extremity and he had gromit’s fitted  aged 6 and things improved massively.

He is now in high school and is doing well but the catch up was hard having not realised for so long he was very hard of hearing.

Hope you find a way forward and get him the support he needs.

Yeah, the hearing tests were one of the first things that happened that really got the ball rolling. All came back normal. I didn't really think he was on the spectrum in the early days, thought maybe he just had a speech delay. As time as gone on it's become much clearer to me, I'd be really surprised if he didn't get a diagnosis of ASD at some point. 

 

He really likes being around other kids, but he'll just sit and play happily on his own with them around him. Occasionally he'll look like he wants to interact with them but just doesn't know how. His sister is great for him (she's a little chatterbox) he will interact with her in ways he won't for anyone else. We got him a tablet which is really good for him, although we do limit the time he has on it as we don't want him to become too obsessed. 

 

He certainly has a few obsessive tendencies. Used to play with doors for hours. Now he likes to rifle through books, back and forth for ages. The challenge is to stop him ripping them as he also loves shredding paper!

 

As has been said, it's not one size fits all really!

[tw511]

2 hours ago, ClaphamFox said:

Don't apologise! This is a great post, and very useful to hear. You're in a very similar situation to me in that your son is the same age and you've also decided to delay his entry into reception. I was immediately struck by your comments about Oxford - we moved to just outside of Oxford last December and, yes, the local authorities have been pretty useless! We've had problems with some of the people assigned to us (their arrogance can be breathtaking at times) and had to request that one woman in particular was replaced (which, to be fair, they did straight away). 

 

We don't have an EHCP yet (the application is in) and have been warned that the chances of rejection are high. The main reason we want one is the increased flexibility over school choices it will give us rather than the help it will provide (Oxfordshire is notoriously stingy in this regard). My partner has spoken to practically every state and private school in Oxfordshire and we're still agonising over that decision. I look forward to the day we have clarity over that.

 

I sympathise with your personal situation. My other half has nothing to do with her family, although we see my family (who reside in Leicester) very frequently. One of the strangest things has been telling friends that our son is probably on the spectrum - some are brilliant and completely unfazed, while others react with horror as if he's got a terminal illness. It's actually quite funny at times...

 

Thanks! We were in Kidlington at the time if that makes any difference, I'm sure some parts of Oxfordshire are better than others for support etc.

 

Certainly is interesting seeing the different ways people react when you tell them. 

 

I remember how cautious nursery were when they approached the subject of him potentially being autistic. They were used to some parents flipping out. We already suspected it at that point so they were surprised how calmly we took it. It's a bit sad how much stigma there is attached still, although obviously things are improving massively.

Edited 3 November 2021 by tw511
Additional info

[FoxyPV]

The health trust did an introductory course for parents and carers post diagnosis and their statement was that autism is a spectrum and because you know one person with autism, you know one person with autism.

 

 

[MPH]

On 03/11/2021 at 14:06, Scotch said:

My daughter is just under two and a half and we have a hunch that once she is old enough to be diagnosed (I'm of the understanding she may be way too young to tell?) she may end up being on the spectrum. 

 

My Mrs has always been more convinced than I am due to her being slower to hit landmarks than her previous two kids. Particularly speech and physical landmarks, rolling over sitting up etc. She is also extremely sensitive to loud noises and does the "hand flapping" thing quite often. 

 

On the other hand, I've always been more sceptical due to certain things she does that seem very UN-autistic. For example, she's always made a lot of eye contact when communicating but in particular, she's always seemed very emotionally intelligent. Even from a very young age, she could pick up on emotions easily.

 

She has always struggled to interact with children her own age and doesn't seem to keen too either but due to her age and the timing of lockdowns, she was never really given that opertunity to do so, so we've recently put her into a childminders for a couple of hours a week purely to let her socialize (she's too young for nursery). Also, there is no doubting that her speech is not where it should be so we got a speech therapist but she isn't worried due to the fact that although her vocabulary is SLIGHTLY limited, she is very good at interacting and communicating in other ways. 

 

We are just at an awkward point where we can't know either way but regardless of her being on the spectrum or not, we are just trying to address the things we can now. 

most professionals will tell you that development starting from 3 years and up is really when  you can start to notice when people are on the spectrum.  Most kids will be ‘ behind’ or excel in one thing or another ages 18 months, ,2, or 2/12 but nearly all kids will have caught up with each other by the age of 3. If they haven’t, that’s when they start to take notice ( if pushed to by the parents). It can still take at least a year of observing and  getting people on board.

 

in other words it’s super rare to get a diagnosis by 3.. usually by 4-5. But sometimes later. The cogs of local authorities turn more slowly in some areas than others.

Edited 4 November 2021 by MPH

[Scotch]

13 minutes ago, MPH said:

most professionals will tell you that development starting from 3 years and up is really when  you can start to notice when people are on the spectrum.  Most kids will be ‘ behind’ or excel in one thing or another ages 18 months, ,2, or 2/12 but nearly all kids will have caught up with each other by the age of 3. If they haven’t, that’s when they start to take notice ( if pushed to by the parents). It can still take at least a year of observing and  getting people on board.

 

in other words it’s super rare to get a diagnosis by 3.. usually by 4-5. But sometimes later. The cogs of local authorities turn more slowly in some areas than others.

Yeah. The Mrs is far more clued upbon this than I am as she worked in early years education so I think she's just trying to get the attention of folk like speech therapists now as, like you say, things move slowly.

 

I personally think she's just a bit of a weirdo but if she IS on the spectrum, it's something we will deal with. It's not like it was 10/20 years ago. We understand it far more. Its more a case of (like you and others have said) getting the support and attention of those we need to early enough. 

[MPH]

2 minutes ago, Scotch said:

Yeah. The Mrs is far more clued upbon this than I am as she worked in early years education so I think she's just trying to get the attention of folk like speech therapists now as, like you say, things move slowly.

 

I personally think she's just a bit of a weirdo but if she IS on the spectrum, it's something we will deal with. It's not like it was 10/20 years ago. We understand it far more. Its more a case of (like you and others have said) getting the support and attention of those we need to early enough. 

Totally get what you are saying. 
 

 

to me it makes no difference if my son is on the spectrum or not. Sometimes too much focus can go on. name or title. BUT, if I can get my son that bit more support to make things easier to him then I’ll do it. And it’s really not about the here and now… but if the support he gets now make the difference between wether my son can make it on his own when he’s older or not, then it’s worth the effort for me.

[tw511]

Hi, was just wondering how everyone was getting on?

 

Our son is finally getting an autism assessment in a couple of weeks, what are people's experiences with this? I won't be there myself, my wife will go in with him while I look after our daughter. The letter indicates we may get an official diagnosis from this one assessment but more follow up may be required. My parents are insistent that it'll take years and years for a diagnosis, although this is based on anecdotal evidence from a friend, so not taking that at face value.

 

Also will be hearing about a school placement from the EHCP board mid February, it's all nerve shredding stuff!

 

Also, this may be a bit random, has anyone had any experience of their child refusing to look at the dinner table? We recently moved him from a booster seat at the table to a cushion, so he's lower down. Now he sort of sits side saddle and refuses to look ahead. When he wants food from his plate he'll sort of side eye it or squint so he's looking at the bare minimum of table. I'm guessing it's a sensory thing that there's something about the way the table looks from the new viewpoint that's overwhelming. Was wondering if anyone had seen anything similar? Would try and raise him up again but then he won't fit under the table!

[Houdini Logic]

My niece went for an assessment at Cauldwell and they made the assessment within the day. It's a very clever process and I felt comfortable that their diagnosis was sound. The place was naturally ASD friendly though it's still inevitably a stressful day for the child. It doesn't need to take any longer than a day - they work with the child in different scenarios and can make an assessment on that. After the assessment day it takes around 4 weeks to get the report/outcome