Autism

[NeverYield]

Well I haven't read through much of this thread as I hadn't actually seen it to be honest but my youngest has Autism and she's been approved for her SEN school which she will start in September, I'm over the moon, the facilities there are brilliant. She's non-verbal, she can't speak to you in context, or tell you what she wants etc, she can say certain words she's picked up from telly etc but that's it. I'm hoping this move will be great for her, her mainstream school have done very well with her, the SEN teachers there are very good, but understandably they don't have the facilities to deal with things properly, and they were happy for her to stay if we felt like we wanted her too, but everyone was in agreement and very supportive that this was the right move. 

[deathrey]

@NeverYield Do you mind me asking how old your daughter is? I have a 5 year old autistic son who sounds incredibly similar to your description. He does communicate need with single words but is a Gestalt Language Processor so is learning scripts etc from TV and does lots of repetition. He sings so much and so loud all the time. He is in mainstream at the moment and loves it but is moving to an autism resource base at the school in September. I still wonder if I should push for specialist provision though.

[DavidB6937]

46 minutes ago, deathrey said:

I can understand you feeling apprehensive. She's still under 10 isn't she? Anecdotally I know a lot of women who are on medication for ADHD and have found it life changing, it's a route I'm currently trying to go down too. I think getting the dose right can be tricky so there is some trial and error till you hit the sweet spot and that obviously varies from person to person.

 

Can I ask an incredibly dumb question? I know there's no simple answer but as someone who's going down the ADHD diagnosis route and may have a decision to make eventually - how's the medication help? I know that'll be different from one person to the next but I'm really curious as to what it does.

[NeverYield]

15 minutes ago, deathrey said:

@NeverYield Do you mind me asking how old your daughter is? I have a 5 year old autistic son who sounds incredibly similar to your description. He does communicate need with single words but is a Gestalt Language Processor so is learning scripts etc from TV and does lots of repetition. He sings so much and so loud all the time. He is in mainstream at the moment and loves it but is moving to an autism resource base at the school in September. I still wonder if I should push for specialist provision though.

She will be 7 tomorrow mate, and that's a positive sign about the single world communication, there's something to build on there for sure. She sings on the very odd occasion and the words aren't very clear, it's more hand stimming with her and just general noises, she also jumps a lot, but with regards to the mainstream school if he's loving it I'd say keep him there and see what else is available in your area in terms of specialist provision, it all varies doesn't it different places seem to go about things in a different way. 

And if ever you feel he needs the change from mainstream to a SEN school start the ball rolling asap as it's quite a lengthy process to get it all across the line. 

[deathrey]

12 minutes ago, DavidB6937 said:

Can I ask an incredibly dumb question? I know there's no simple answer but as someone who's going down the ADHD diagnosis route and may have a decision to make eventually - how's the medication help? I know that'll be different from one person to the next but I'm really curious as to what it does.

Essentially it helps manage the levels of key brain chemicals—specifically dopamine and Norepinephrine —which regulate attention, motivation, and impulse control. It's similar to how antidepressants work - it helps balance your brain chemistry. But it's not an exact science as everyone's brain chemistry is different and there is no definitive way of knowing who lacks what and how much of it so it's a little trail and error but if you get the right combination, it's life changing.

When speaking to the young people I work with I always liken it to taking medication for diabetes. Everyone's make up is slightly different so a different combination is needed for each individual. I think looking at it int he medical model can help people's attitudes towards it too as there is a lot of fear and stigma but most people wouldn't tell diabetics to stop taking insulin, it's life saving and life changing and the same goes for medication that balances your brain chemistry.

Edit: also no such thing as a dumb question! It's always best to ask 

Edited June 9 by deathrey

[deathrey]

14 minutes ago, NeverYield said:

She will be 7 tomorrow mate, and that's a positive sign about the single world communication, there's something to build on there for sure. She sings on the very odd occasion and the words aren't very clear, it's more hand stimming with her and just general noises, she also jumps a lot, but with regards to the mainstream school if he's loving it I'd say keep him there and see what else is available in your area in terms of specialist provision, it all varies doesn't it different places seem to go about things in a different way. 

And if ever you feel he needs the change from mainstream to a SEN school start the ball rolling asap as it's quite a lengthy process to get it all across the line. 

Yeah he does the odd in context whole sentence too. I know they get more dedicated support with things like SALT in SEND schools and I always question myself as to whether he would make more progression in specialist provision and am I selling him short? He will have much more dedicated speech and language therapy in the Mainstream Autism Base though and they do things like sensory circuits everyday to help regulate and reduce the need for constant movement (my son is a sensory seeker in that regard too). I guess we will have to see the year out and see how he gets on. 

I think he enjoys school, he doesn't put up much if a fight to go in - just the usual struggles between transitions - and runs in when we get to the playground in the morning so I take that as he likes it. As I'm sure you can relate, it's hard to know with a child who doesn't communicate traditionally. It's not like I can ask him 'do you like school?', I've tried I get no response or acknowledgement. It's toughest when he ill and trying to figure out what is wrong.

Best of luck to your daughter in her new setting, may she flourish! 

[NeverYield]

4 hours ago, deathrey said:

Yeah he does the odd in context whole sentence too. I know they get more dedicated support with things like SALT in SEND schools and I always question myself as to whether he would make more progression in specialist provision and am I selling him short? He will have much more dedicated speech and language therapy in the Mainstream Autism Base though and they do things like sensory circuits everyday to help regulate and reduce the need for constant movement (my son is a sensory seeker in that regard too). I guess we will have to see the year out and see how he gets on. 

I think he enjoys school, he doesn't put up much if a fight to go in - just the usual struggles between transitions - and runs in when we get to the playground in the morning so I take that as he likes it. As I'm sure you can relate, it's hard to know with a child who doesn't communicate traditionally. It's not like I can ask him 'do you like school?', I've tried I get no response or acknowledgement. It's toughest when he ill and trying to figure out what is wrong.

Best of luck to your daughter in her new setting, may she flourish! 

That's very good. I think when she says something to me in total context I'll likely break down in tears 🤣 yes the SALT is very much what we're looking forward too, and we had the exact same thing with regards to questioning, we mulled it over plenty of times, as is natural, as you always want the best for them. But we gave it a shot and she's very well liked where she's been, thankfully hasn't experienced any nastiness from the other kids either which I know they're not exactly high school age, but still, they've been great with her and are apparently very understanding with her and try too include her, but from a development point of view we all agree now it's come to a point where we feel she will be better off at a school that can cater to her needs even better. My friends son is autistic and he started at a SEN school a couple of years ago and it's done him the world of good.

Yeah some mainstream school's have great Autism set ups don't they, her current school has a sensory room etc but it's the sensory needs that she also needs a lot of support to meet, and they've said as much so we'll see how we get on. 

It's good he enjoys school, that's half the battle sometimes, and encouraging to see him run in and as you say you can rightly take that as a positive indication. The traditonal communication can be a massive challenge yes and I agree its much tougher when they are not well, it's really upsetting actually for them not to be able to tell you what's wrong, and it must be a great source of frustration for them, as this can often cause some of the meltdowns they have, that frustration of not being able to communicate with you.

Thank you, same to you and your son, hope he continues to enjoy school and make improvements. 

[Chest Rockwell]

Hey @deathrey sorry I just haven't had the chance to reply properly but wanted to say I really appreciated your response. So thank you! 

She has started the meds. The first couple days were a bit scary, but she seems to be getting on well. Will see how we go!

[mim731]

Had my assessment today. I was initially turned down for assessment, but after submitting some further supporting evidence from myself/my wife on certain things that I felt like the initial questionnaire didn't really capture, I was given an appointment.

Long story short, I now have a diagnosis. Not quite sure what to do with the information yet, and if I'm honest I felt absolutely exhausted after the meeting. Relieved, but feel a bit...strange. Like I don't quite know how to feel/process. 

Does this ring true to other people's experiences? 

Also thank you for the help/advice/sharing your stories. Just having this thread here has been invaluable in reassuring myself I was doing the right thing. 

[DavidB6937]

8 minutes ago, mim731 said:

Had my assessment today. I was initially turned down for assessment, but after submitting some further supporting evidence from myself/my wife on certain things that I felt like the initial questionnaire didn't really capture, I was given an appointment.

Long story short, I now have a diagnosis. Not quite sure what to do with the information yet, and if I'm honest I felt absolutely exhausted after the meeting. Relieved, but feel a bit...strange. Like I don't quite know how to feel/process. 

Does this ring true to other people's experiences? 

Also thank you for the help/advice/sharing your stories. Just having this thread here has been invaluable in reassuring myself I was doing the right thing. 

Not had my assessment yet but have a few friends who have been diagnosed and everyone's been different. One of them felt such a relief like it was the missing piece to everything they've been looking for. Another really struggled with it, feeling like they should've done something about it years ago, and almost treated the diagnosis with contempt and frustration. But there's definitely a lot of exhaustion, mixed emotions and very much a 'what now?' feeling shared between them. So what you're describing sounds completely expected. As with the whole journey, you just need to take it one step at a time at your own pace and make the decisions that are right for you.

[BomberPat]

2 hours ago, mim731 said:

Had my assessment today. I was initially turned down for assessment, but after submitting some further supporting evidence from myself/my wife on certain things that I felt like the initial questionnaire didn't really capture, I was given an appointment.

Long story short, I now have a diagnosis. Not quite sure what to do with the information yet, and if I'm honest I felt absolutely exhausted after the meeting. Relieved, but feel a bit...strange. Like I don't quite know how to feel/process. 

Does this ring true to other people's experiences? 

Also thank you for the help/advice/sharing your stories. Just having this thread here has been invaluable in reassuring myself I was doing the right thing. 

I talked about it on the previous page, but I felt absolutely shattered after my assessment. I definitely recognise that sense of exhausted, relieved, and just odd. Though I had done so much reading around it and recognised so much of myself in other autistic people's stories that I think I'd have felt weirder and more at a loss if they told me I wasn't autistic.

I feel fortunate that I met up with an old mate of 20+ years, one of very few people outside of my family to have known me that long that I'm still friends with, the same day I got my assessment results, completely by coincidence. It meant I could tell him - he was probably the second person I told after my partner - and that I wasn't just in my head going over things from my past, I had someone to talk it through who had been there for a fair chunk of it. 

I do feel generally happier for it. I feel like I mask less now, because now I understand that I was masking. More than anything, I think it's made conversation with my partner so much easier - if there's a misunderstanding, or we disagree about something, I'm able to take a step back and say, "this is how I understood this situation", or "this is how I interpreted what you just said", and for us both to recognise that these are neutral statements. When there's assumption that your brains function the same way, you make the mistake of thinking you share the same understanding of what's happening, and just taking a moment to establish where you're both coming from is a really helpful tool to have.

My parents were more supportive than I thought they would be. I had always assumed my Dad would have a bit of a standoffish approach to it, either insisting that there's obviously nothing "wrong" with me, or not understanding the point of getting diagnosed at my age, with a bit of an undercurrent of not really believing all this neurodiversity stuff - he's an exam invigilator, and the day I was intending to ask him to contribute to my assessment, he was complaining about the number of kids getting additional support, which didn't really put me in a frame of mind to think he would be supportive about it. When I got it done, though, he told me he was proud of me for doing it, which isn't something he says easily.

I think my Mum felt like she'd done wrong by me for not having sought out a diagnosis when I was younger, and seemed a bit sad about it all, but I reassured her that I thought now was the right time and I don't think getting diagnosed earlier would have made much difference. I don't think any of the schools I went to would have been particularly good at making accommodations for me, and having a label at that age and in that environment would likely have just given other kids one more reason to bully me, so I suspect it probably would have made things worse, if anything. Then once I was in my teens and early twenties, I imagine I'd have just hidden behind it a bit.

[Monkee]

On 6/9/2026 at 9:43 AM, deathrey said:

Anecdotally I know a lot of women who are on medication for ADHD and have found it life changing, it's a route I'm currently trying to go down too. I think getting the dose right can be tricky so there is some trial and error till you hit the sweet spot and that obviously varies from person to person.

I was diagnosed 4 years ago (at the ripe old age of 42) and it was genuinely life changing. It just helped me to understand more about myself, have more control, forgive past behaviour, etc. There was some grief for things that could have been different but I try not to dwell on it.

Even if I hadn’t been diagnosed, understanding certain traits like executive dysfunction, time blindness, emotional disregulation, hyper fixations, rejection sensitivity, impulsivity and task avoidance helped me to manage myself and put coping mechanisms into place. It also helped friends and family to know how and when to support me.

In relation to medication, I find that it helps me in a few areas. It’s a mood stabiliser so I don’t feel like I’m bouncing off the walls (stops the impulsivity and sometimes reckless behaviour) or paralysed with depression the next. It helps me manage energy levels so I’m not falling asleep in the middle of the day. I did learn not to take my meds before a long-haul flight if I was intending to sleep though. I’m more focused, productive, and I don’t get overwhelmed as much.

I do still struggle at times but as I’m open about what support I need then I’m lucky that friends and family often notice things before I do. My sleep pattern hasn’t really improved (I still end up doomscrolling until 4am even if I’m absolutely exhausted) and lack of sleep is a huge trigger for me. I also forget to take my meds quite a lot and made the stupid “I feel great, I don’t need to take them” mistake from around March to June this year then had a total meltdown that took about a week to recover from, resetting myself and get back into the routine of taking them again.

So on the whole - best thing I ever did.

@DavidB6937 Hope this helps with your question about meds too. As @deathreysaid, no such thing as a dumb question with this stuff. There’s so much info and voices out there it can be hard to find the answers you’re looking for.

Edited September 1 by Monkee

[Cod Eye]

Need some general advice please?

So my new partner's 21 year old son is very high functioning autistic. The lads a total genius! If she hadn't told me he was autistic, I wouldn't have known, and just assumed he was a bit "geeky" in his interests and had an addictive personality(I say geeky, as he's hooked on things like Warhammer, and it has become the cornerstone of his personality. Im sorry if thats not the right term, but its not used as a negative in this context).

Now, I have absolutely ZERO experience with Autistic people. I'm sure I've worked with Autistic people at some point, but if I did, I didn't know. I get every single autistic person is completely different, but are there any general tips you could give me to help make his life better/easier when were together? I know he doesn't like making eye contact, he's not touchy/feely and he struggles to work out peoples emotions, often asking if his mum and I are mad at him(when many a time we are only joking about something which is something I'm trying to stop doing for him). So, I am learning slowly!

Also, he confided in me the other night he's lonely and wants a girlfriend. He wants her to be also Autistic, and also like Warhammer. I can imagine finding the first would be much easier than finding an Autistic woman who also loves Warhammer! But I suppose what I'm asking is how do you/your loved ones go about dating while living with Autism? I'd love to help him find someone, but no idea where to start.

ANY advice would be appreciated(even if its sent in a DM).

Cheers!

 

 

[DavidB6937]

23 minutes ago, Cod Eye said:

Need some general advice please?

So my new partner's 21 year old son is very high functioning autistic. The lads a total genius! If she hadn't told me he was autistic, I wouldn't have known, and just assumed he was a bit "geeky" in his interests and had an addictive personality(I say geeky, as he's hooked on things like Warhammer, and it has become the cornerstone of his personality. Im sorry if thats not the right term, but its not used as a negative in this context).

Now, I have absolutely ZERO experience with Autistic people. I'm sure I've worked with Autistic people at some point, but if I did, I didn't know. I get every single autistic person is completely different, but are there any general tips you could give me to help make his life better/easier when were together? I know he doesn't like making eye contact, he's not touchy/feely and he struggles to work out peoples emotions, often asking if his mum and I are mad at him(when many a time we are only joking about something which is something I'm trying to stop doing for him). So, I am learning slowly!

Also, he confided in me the other night he's lonely and wants a girlfriend. He wants her to be also Autistic, and also like Warhammer. I can imagine finding the first would be much easier than finding an Autistic woman who also loves Warhammer! But I suppose what I'm asking is how do you/your loved ones go about dating while living with Autism? I'd love to help him find someone, but no idea where to start.

ANY advice would be appreciated(even if its sent in a DM).

Cheers!

Sorry for probably the absolute dumbest question but in terms of making his life better/easier - is this something you've discussed openly with his mum? As I would assume she'd have quite a lot of experience and knowledge about his likes/dislikes/reactions to situations etc? Or is that something that's difficult to talk about with her too much?

[Cod Eye]

14 minutes ago, DavidB6937 said:

Sorry for probably the absolute dumbest question but in terms of making his life better/easier - is this something you've discussed openly with his mum? As I would assume she'd have quite a lot of experience and knowledge about his likes/dislikes/reactions to situations etc? Or is that something that's difficult to talk about with her too much?

No need to apologise, its a valid question!

Yes, we have spoken. The trouble is, as he's got older, he's kinda withdrawn from talking to her a bit as he's wanted to be more independent, so she's been a bit worried too. He really opened up to me at the weekend though, and wants to do things just the two of us(and that's what's worrying me most). She's told me to not play any music with heavy bass in the car, as he finds that hard to process. To not try to make eye contact, and try to walk with enough distance between us so I don't bump into him and things. Im trying to learn and recognise his triggers for when he gets overwhelmed at the minute, as Id hate to take him somewhere and it overwhelm him. 

Another issue, is the fact he's trying to be more independent/grown up, as he seems to be trying to hide it when he's triggered and also the things that help him. For example, his mum found out recently he's been going to his dads and smoking weed when he was anxious and has been for a while. 

Edit:

That's another question. Would weed genuinely help him, or would it be an excuse to get stoned? Would weed effect someone Autistic different to someone who Isn't? Again, I hope that is not a stupid or ignorant question. Im just a total newbie to all this and feeling lost and a bit overwhelmed myself to be honest!

Edited September 3 by Cod Eye