your experiences of autism?

downsouth said:
thanks. It does seem that professional diagnosis is essential. We have started the process, although they say it will take nearly 2 years. That seems crazy.
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It took over 10 years to get a diagnosis for my son, as we kept getting knocked back as we worked our way through the process. Unfortunately, you sometimes have to cause a stink to get through it, don't be a "nice" parent, be a pain in the **** until you get what your daughter needs. As I see it autism is a label for a multi-spectrum condition but without the label you will not get the extra support.

One thing I did find useful was the Cygnet programme. This puts you in a group with other parents of autistic children, explains what autism is and allows you to discuss experiences with the parents https://www.autism.org.uk/directory/b/barnardos-cygnet-parent-carersupport-programme

Also search for the "Local Offer" from your local authority, this gives you an idea of additional support available.
 
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My son was diagnosed 2 years ago but it’s something we had suspected since he was young. He has global development delay, dyspraxia and other learning difficulties which has had a big impact on his development. Diagnosis took a long time and we had a long battle with CAMHS for a few years but we got there in the end.

School at the moment is very supportive, he has a brilliant one to one teaching assistant who has known him since he was in Nursery (he is now year 4). Academically he is behind and working more at a year 2/3 level. School has been challenging in the past with certain issues but that’s more of a higher up level (SLT) than teacher/ta. Luckily we seem to have sorted that but it did take council intervention/governors. I am a teacher and my wife is very knowledgable on SEND so we have been able to draw on that experience when dealing with issues.

He is currently in mainstream school but it’s already been agreed that he will require specialist provision for his secondary education. Mainstream school would not be an option for him.

Everyday is different with him, somedays he is talkative and happy, other days he is angry, confused and lashes out. His behaviour can be challenging and as he gets older, it’s something that is becoming more difficult to deal with. He cannot read social situations, often says inappropriate things which others can portray as rude, has few friends and those that he thinks are his friends are not when we have found out things they have done (recently some of his “friends” ignored him in front of my wife and he defended them when my wife asked about it. He said that happens often but it’s “normal”).

Luckily he will eat a varied diet but will not try new things. We persisted with food when he was younger which seems to have helped as he will eat a number of different items. Food colouring can cause issues though. Certain colours of food make him gag, for example if he sees green dyed food at Halloween, he will gag at the site or thought of it if it’s mentioned.

He goes to bed without much fuss but he has always been an early riser (this can be anywhere between 12-5am). He doesn’t like to be told to go back to bed as he thinks If he is up then it’s time to be up regardless of the time. He has gotten better as he gets older but 4am is the usual get up time.

He likes the comfort of home and routine, doesn’t feel comfortable outside of that environment. Any change can cause crisis. We haven’t been abroad since before COVID but he didn’t deal well with it as there was no routine and it was all new. We are due to go away in the Easter holidays so we will see what that brings.

He hates clothes, doesn’t like them on and quite often will want to be in no clothes. As soon as he comes in from school, the clothes come off, weekends etc. When he does wear clothes, he prefers loose fitting, baggy clothes.

I think the biggest issue/worry I have faced is not knowing what quality of life he will have as he grows up. He may catch up academically, he may always struggle. He may require help etc and that is a something I think any parent would worry about.
 
Moreno said:
My son was diagnosed 2 years ago but it’s something we had suspected since he was young. He has global development delay, dyspraxia and other learning difficulties which has had a big impact on his development. Diagnosis took a long time and we had a long battle with CAMHS for a few years but we got there in the end.

School at the moment is very supportive, he has a brilliant one to one teaching assistant who has known him since he was in Nursery (he is now year 4). Academically he is behind and working more at a year 2/3 level. School has been challenging in the past with certain issues but that’s more of a higher up level (SLT) than teacher/ta. Luckily we seem to have sorted that but it did take council intervention/governors. I am a teacher and my wife is very knowledgable on SEND so we have been able to draw on that experience when dealing with issues.

He is currently in mainstream school but it’s already been agreed that he will require specialist provision for his secondary education. Mainstream school would not be an option for him.

Everyday is different with him, somedays he is talkative and happy, other days he is angry, confused and lashes out. His behaviour can be challenging and as he gets older, it’s something that is becoming more difficult to deal with. He cannot read social situations, often says inappropriate things which others can portray as rude, has few friends and those that he thinks are his friends are not when we have found out things they have done (recently some of his “friends” ignored him in front of my wife and he defended them when my wife asked about it. He said that happens often but it’s “normal”).

Luckily he will eat a varied diet but will not try new things. We persisted with food when he was younger which seems to have helped as he will eat a number of different items. Food colouring can cause issues though. Certain colours of food make him gag, for example if he sees green dyed food at Halloween, he will gag at the site or thought of it if it’s mentioned.

He goes to bed without much fuss but he has always been an early riser (this can be anywhere between 12-5am). He doesn’t like to be told to go back to bed as he thinks If he is up then it’s time to be up regardless of the time. He has gotten better as he gets older but 4am is the usual get up time.

He likes the comfort of home and routine, doesn’t feel comfortable outside of that environment. Any change can cause crisis. We haven’t been abroad since before COVID but he didn’t deal well with it as there was no routine and it was all new. We are due to go away in the Easter holidays so we will see what that brings.

He hates clothes, doesn’t like them on and quite often will want to be in no clothes. As soon as he comes in from school, the clothes come off, weekends etc. When he does wear clothes, he prefers loose fitting, baggy clothes.

I think the biggest issue/worry I have faced is not knowing what quality of life he will have as he grows up. He may catch up academically, he may always struggle. He may require help etc and that is a something I think any parent would worry about.
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The quality of life thing is a huge thing. We plan to retire to the seaside and daughter come with us. Hope is to get a bit of land to let her get some animals to look after. Ideally she will have a job working with animals. We are lucky our son who is younger is so caring and his life plan involves looking after his sister. Might not happen exactly like that but we know he will do his best
 
Moreno said:
My son was diagnosed 2 years ago but it’s something we had suspected since he was young. He has global development delay, dyspraxia and other learning difficulties which has had a big impact on his development. Diagnosis took a long time and we had a long battle with CAMHS for a few years but we got there in the end.

School at the moment is very supportive, he has a brilliant one to one teaching assistant who has known him since he was in Nursery (he is now year 4). Academically he is behind and working more at a year 2/3 level. School has been challenging in the past with certain issues but that’s more of a higher up level (SLT) than teacher/ta. Luckily we seem to have sorted that but it did take council intervention/governors. I am a teacher and my wife is very knowledgable on SEND so we have been able to draw on that experience when dealing with issues.

He is currently in mainstream school but it’s already been agreed that he will require specialist provision for his secondary education. Mainstream school would not be an option for him.

Everyday is different with him, somedays he is talkative and happy, other days he is angry, confused and lashes out. His behaviour can be challenging and as he gets older, it’s something that is becoming more difficult to deal with. He cannot read social situations, often says inappropriate things which others can portray as rude, has few friends and those that he thinks are his friends are not when we have found out things they have done (recently some of his “friends” ignored him in front of my wife and he defended them when my wife asked about it. He said that happens often but it’s “normal”).

Luckily he will eat a varied diet but will not try new things. We persisted with food when he was younger which seems to have helped as he will eat a number of different items. Food colouring can cause issues though. Certain colours of food make him gag, for example if he sees green dyed food at Halloween, he will gag at the site or thought of it if it’s mentioned.

He goes to bed without much fuss but he has always been an early riser (this can be anywhere between 12-5am). He doesn’t like to be told to go back to bed as he thinks If he is up then it’s time to be up regardless of the time. He has gotten better as he gets older but 4am is the usual get up time.

He likes the comfort of home and routine, doesn’t feel comfortable outside of that environment. Any change can cause crisis. We haven’t been abroad since before COVID but he didn’t deal well with it as there was no routine and it was all new. We are due to go away in the Easter holidays so we will see what that brings.

He hates clothes, doesn’t like them on and quite often will want to be in no clothes. As soon as he comes in from school, the clothes come off, weekends etc. When he does wear clothes, he prefers loose fitting, baggy clothes.

I think the biggest issue/worry I have faced is not knowing what quality of life he will have as he grows up. He may catch up academically, he may always struggle. He may require help etc and that is a something I think any parent would worry about.
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A parents worst nightmare, have I done enough to prepare them for life when we are no longer here? I have the same thoughts, you have my sympathy, I hope you are all OK.
 
downsouth said:
What are your experiences of this condition? You, your kids, or others you know?

My daughter (whose 9) is showing certain traits. Although she's bright, normal intelligence and articulate she lacks any empathy, just kicks her heels in and won't cooperate when asked to do anything, gets angry easily, hates school etc. She's also dyslexic and now her teachers have indicated that she's possibly on the spectrum and want her tested (this process takes nearly two years, I've been told). She does have close friendships, but they are quite volatile, all love and hate. She seems emotionally immature compared to my other kids at this age.

Wondering if anyone else has experiences of this?
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Assessment by CAMHS is key to getting schools to properly support your daughter and school support is a massive part of them having a decent time/life while at school.
Best of luck to you & your family.
 
There`s a family member who is on the spectrum with CDD. Her development is akin to a child much younger. Recently commenced "Special" School - for the first time getting out of the house and travelling on the Special transport to school. Learning new words and ways of expressing themself: when frustrated the child bites Dad and resorts to isolation, in totally predictable and familiar surroundings. Communication is improving considerably. Basic functionality will take longer to improve.
Professionally I`ve worked with adults on the spectrum.
Whoever mentioned "neurodiversity" earlier - its a relief to know that someone else has raised the issue - because it highlights we all learn differently and our brains behave differently. A consultant once said to me "the normal is that there is no normal". Absolutely true.
Really helpful thread by the way.
Thank you(y)
 
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downsouth said:
What are your experiences of this condition? You, your kids, or others you know?

My daughter (whose 9) is showing certain traits. Although she's bright, normal intelligence and articulate she lacks any empathy, just kicks her heels in and won't cooperate when asked to do anything, gets angry easily, hates school etc. She's also dyslexic and now her teachers have indicated that she's possibly on the spectrum and want her tested (this process takes nearly two years, I've been told). She does have close friendships, but they are quite volatile, all love and hate. She seems emotionally immature compared to my other kids at this age.

Wondering if anyone else has experiences of this?
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Thanks for a really helpful thread(y)
 
Rauko said:
My 9 year old son is on the spectrum (would be classed as Aspergers when it was a thing) ... he has issue with his social skills .. doesn't take an interest and doesn't want to / cant speak about anything other than his special interests .. We can get him to engage about other things briefly but he soon brings the conversation back to his latest "thing" ..
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I am not being flippant when I say that some of the best minds I work with in technology and business are like minded. Given an environment in which people can thrive, they invariably do. No-one isn't on a spectrum if you think about it logically.
 
Interesting this thread popped up again. As a parent, its actually heartening to see that so many parents have similar experiences, it makes it a bit less challenging knowing other people can empathise and just having a place to chat/vent does help.
 
BaronSmoggie said:
I can echo this. My daughter is 5, we had her ASD confirmed 2 years ago. Hers mainly manifest as sensory and social miscues, she cannot go into any environment that is incredibly noisy, but if its quiet and the noise builds up, she is OK. She also is very particular about her toys, everything has to be in its place and WW3 erupts if it isn't. My wife and I found it difficult at first. We had her hearing tested as she didn't seem to respond to stimuli, but that was fine. Then over time, we realised her behaviour was a little different so we had her tested. She got a confirmed diagnosis just before she turned 4. Once you get the diagnosis, it can really help with funding and support for your child.

1. Disability support and blue badge.
2. Specific support from a trained professional who comes once a month to assess your child and provide advice on things to do to help development. Develops a development plan for the parents.
3. We both taught ourselves sign language as our daughter found it easier to communicate that way before she could speak, and she still uses it now to sometimes emphasise a point.
4. A trained teaching assistant who stays with your child through school that gives them a support person that they know and trust and can rely on.
5. Working with the school to ensure there are places designated quiet areas where children can go if they have sensory overload.
6. Autistic people don't like surprises. Planning and preparation go a long way to making lives easier on both sides.

We also both read this book 'Can you See Me by Libby Scott & Rebecca Westcott' which gives an insight in to how autistic people think and react to situations. Its really good for understanding a mindset.

Autism is a challenge. We are thankful ours is on the mild end of the spectrum, and even then, its challenging, but we wouldn't change her for the world. She's incredibly happy, a total prankster and she has so much empathy for other kids, it makes my heart ache when I see it. There is another boy in her class who is further on the spectrum and the kids are scared of him due to not understanding he is different. Our daughter seems to have connected with him, like minded souls I guess.
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Great to hear your getting all that support at an early age which local authority are you under if you dont mind me asking. My daughters 9 and we are still going through the support process after two years.my daughters school have been quite poor in assiting us get further support but we are so far through the process now we dont want her to change schools until thats done.
 
sweet_left_foot said:
I am not being flippant when I say that some of the best minds I work with in technology and business are like minded. Given an environment in which people can thrive, they invariably do. No-one isn't on a spectrum if you think about it logically.
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Yeah, we know that - but he's 10 year old and I've never really had a proper conversation with him .. it HAS to be about Fortnite or the YouTube channel he watches .. anything else quickly jumps topic within a couple of sentences to the latest thing he has to tell us about Fortnite or Harry Potter (of late) .. he just has no interest in anything else and just zones out if you're not talking about his 'thing'
 
I can heartily recommend the recent Chris Packham series "My Autistic Mind", which actually features a Boro fan. It taught me a lot about the behaviour of the autistic young athlete that I coach which I hadn't previously twigged. It also enabled me to talk about, and actually have a laugh with her about, some of the little things that drive her mad. A lot of the stuff about familiarity and routine, timetabling, clockwatching and aversion to change, I just hadn't picked up on before. I must say that I really love the challenge of trying to be better for her. It's very rewarding, if difficult at times.
 
downsouth said:
What are your experiences of this condition? You, your kids, or others you know?

My daughter (whose 9) is showing certain traits. Although she's bright, normal intelligence and articulate she lacks any empathy, just kicks her heels in and won't cooperate when asked to do anything, gets angry easily, hates school etc. She's also dyslexic and now her teachers have indicated that she's possibly on the spectrum and want her tested (this process takes nearly two years, I've been told). She does have close friendships, but they are quite volatile, all love and hate. She seems emotionally immature compared to my other kids at this age.

Wondering if anyone else has experiences of this?
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Some of the traits you mention are present with my daughter too but she's not autistic, girls hormones can start kicking in at that age and cause some of the mood issues. The overall picture with your daughter though does sound a bit different.

My nephew is midly autistic and his parents decided against pursuing diagnosis because they felt overall he wouldn't benefit in terms of the balance between being labelled and the actual benefit of the support he'd receive I'm not sure if that's right or wrong in truth as i have no knowledge of the subject.
 
Glover_elbow said:
Great to hear your getting all that support at an early age which local authority are you under if you dont mind me asking. My daughters 9 and we are still going through the support process after two years.my daughters school have been quite poor in assiting us get further support but we are so far through the process now we dont want her to change schools until thats done.
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Hi, sorry to hear its being dragged out for you. I live in Weymouth in Dorset. We have had good support, I think quite fortuitously for us, it was all sorted before Covid and the ensuing issues with that. I can echo the school comments though, we recently had an annual review about our daughter and even though there is all this provision for her, she is changing TA's for the fourth time in 2 years and is so far behind at school, my wife and I are now home schooling her alongside her regular school classes because the teachers are assuming our daughter can't use certain things without even asking her. She uses a laptop at home and she has picked up it amazingly.

Don't give up. When you get the EHCP, then there is disability provision and a load of help. My wife and I completed an autism awareness course earlier this year which is only available to kids with an EHCP and it was invaluable. The National Autism Society is also a great resource.
 
My Son was diagnosed around 10 years ago (13 now). He is high functioning which is obviously a massive help.

I have to say, for us at least, it got better. When he was younger it was much harder, although a lot of this is down to a massive learning curve, but for him as well as us. We have been very lucky in that his primary school was extremely supportive and he had as good as permanently assigned TLA throughout primary we are also very lucky in that we have an educational psychologist with an autism specialty in the family as well as a former primary school teacher with their own significant experience of special needs.

Even with all of this its been a struggle, learning how he works learning about meltdowns, stimming, and learning how to navigate this world. It has also been a fight every step of the way for funding which has been harder and harder to obtain as the years went by.

It's a lot better now, our focus all the way through with our own attitude towards it and in conjunction with the schools has been to help give him the tools he needs to be able to exist and operate in this world. Now he understands his own head and his own needs better than anyone and is so much better at being able to take himself off for timeouts and calm when he needs to.

He of course still has struggles... Bullies are a particular problem now in secondary school where kids clearly notice someone who is different to them and this now forms the majority of our support. Teenage years can be hard on any kid, even more so when you dont necesarially conform to expected social norms. Kids can be cruel.

So, in some ways it gets easier, in other ways challenges remain, those challenges just change.

Advice and support is key. Daisy Chain in Stockton are an amazing charity and they provide all sorts of support and help - I cannot recommend getting in touch with them enough. They do work with kids, parents and family members ... I am not sure we would be where we are today without them and their support and expertise.

It's also taught me to recognise some things in myself ... I have never bothered to do so, but it has led me to wonder if I might actually get a diagnosis if I tried.

Anyway, this is the point in any post I start rambling, but always happy to help if you have any questions ...

But seriously, Daisy Chain ... I cannot recommend them enough.
 
Some wonderfully caring dads on this forum. 💙 I have no experience or advice to offer but wish you and your families all the best going forward. No one least of all young children should have to wait years for a diagnosis.
 
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