Autism

[deathrey]

I wasn't sure whether to put this here or in the children thread so please move it if it's better in the other thread. I've been thinking about posting this for a while but I'm not sure what I'm looking for so I think it may just be for catharsis/support/reassurance.

I am convinced that my 3 year old is neurodiverse. There are quite a few things that suggest this to me and I'm not going to list them all but I'm finding the process really frustrating. Anyone I speak to seems to give me the 'he seems fine, are sure it's not just his personality/normal for a 3 year old etc etc' and whilst I understand he is young and I could be wrong, I don't think I am. He speaks (began talking very early actually) but his language acquisition really stalled around 20 months old, and I think he regressed somewhat. He's now very behind in language acquisition and does a lot of repetition of language, he has a huge vocabulary for a 3 year old but doesn't form sentences or use the words correctly. He has been referred Speech & Language and is due to be seen in July. I've also looked in to going private but that's complicated as we have an LA who frown on that and I need their support in regards to schools etc. 

I'm struggling to get any traction with getting an assessment for him - I'm pushing for this as I think he will struggle in school without support, he's due to start in September 2025. We are even struggling with things like potty training because he just isn't bothered about having a wet nappy etc and won't communicate/doesn't seem to be aware that he needs the toilet - he's not great with thirst or hunger cues either. We saw the peadiatrician at the local hospital not long ago and she doesn't want to investigate if he is Autistic yet as she feels that it's a Speech & Language need (though that doesn't explain his not playing or interacting with other kids along with other things) and said 'if he is autistic he's going to be high functioning so you shouldn't have too much to worry about' which I found a bit infuriating. He does give 'normal' eye contact and doesn't seem to have audio sensory issues, he does interact with people to some extent which he did with doctor so I felt she wrote my concerns off.

He had an almighty meltdown this morning, tot he point where he nearly made himself sick, because I tried to put him in shorts and a t-shirt for nursery, not having his limbs covered really seems to bother him. I don't know if it's a sensory thing or a routine thing (he wants to wear what he usually wears), any tips on what might help him as the weather gets even hotter? I've got some long sleeve t-shirts for him.

I'm finding the whole process so slow and frustrating and I feel a bit like he is at an age where getting support could have a huge positive impact but time is dwindling away whilst we wait for referrals to be picked up and for anyone to actually do anything.

[DavidB6937]

14 minutes ago, deathrey said:

I wasn't sure whether to put this here or in the children thread so please move it if it's better in the other thread. I've been thinking about posting this for a while but I'm not sure what I'm looking for so I think it may just be for catharsis/support/reassurance.

I am convinced that my 3 year old is neurodiverse. There are quite a few things that suggest this to me and I'm not going to list them all but I'm finding the process really frustrating. Anyone I speak to seems to give me the 'he seems fine, are sure it's not just his personality/normal for a 3 year old etc etc' and whilst I understand he is young and I could be wrong, I don't think I am. He speaks (began talking very early actually) but his language acquisition really stalled around 20 months old, and I think he regressed somewhat. He's now very behind in language acquisition and does a lot of repetition of language, he has a huge vocabulary for a 3 year old but doesn't form sentences or use the words correctly. He has been referred Speech & Language and is due to be seen in July. I've also looked in to going private but that's complicated as we have an LA who frown on that and I need their support in regards to schools etc. 

I'm struggling to get any traction with getting an assessment for him - I'm pushing for this as I think he will struggle in school without support, he's due to start in September 2025. We are even struggling with things like potty training because he just isn't bothered about having a wet nappy etc and won't communicate/doesn't seem to be aware that he needs the toilet - he's not great with thirst or hunger cues either. We saw the peadiatrician at the local hospital not long ago and she doesn't want to investigate if he is Autistic yet as she feels that it's a Speech & Language need (though that doesn't explain his not playing or interacting with other kids along with other things) and said 'if he is autistic he's going to be high functioning so you shouldn't have too much to worry about' which I found a bit infuriating. He does give 'normal' eye contact and doesn't seem to have audio sensory issues, he does interact with people to some extent which he did with doctor so I felt she wrote my concerns off.

He had an almighty meltdown this morning, tot he point where he nearly made himself sick, because I tried to put him in shorts and a t-shirt for nursery, not having his limbs covered really seems to bother him. I don't know if it's a sensory thing or a routine thing (he wants to wear what he usually wears), any tips on what might help him as the weather gets even hotter? I've got some long sleeve t-shirts for him.

I'm finding the whole process so slow and frustrating and I feel a bit like he is at an age where getting support could have a huge positive impact but time is dwindling away whilst we wait for referrals to be picked up and for anyone to actually do anything.

If there's anything I've learnt as a parent - stick to your guns and keep fighting. It's exhausting. It's frustrating. It's a bazillion other things but eventually, somehow and somewhere, you'll hopefully get the breakthrough you need. And yeah, you're the best one to fight his corner. You know him better than anyone and you'll see things that others don't.

I have friends that were in similar situations and it took them a long time to get where they needed to be with a diagnosis but it's certainly been worth it for them. They were fobbed off more times than I care to remember and it was incredibly upsetting for them, as I imagine it is for you.

To be honest, our middle child is (we believe) likely in a similar situation, but thankfully it isn't impacting on anything too much right now so we're not pushing it too much, as we've got bigger things to deal with with my son's condition. But we've also had a few of those conversations where you get gaslit and start to think you're going crazy.

I don't really have much more to offer in terms of tips or anything - just support and understanding. Always a message away if you ever need someone to talk to. I've learnt the hard way that sharing the burden and venting is definitely a good idea.

[Hannibal Scorch]

24 minutes ago, deathrey said:

I wasn't sure whether to put this here or in the children thread so please move it if it's better in the other thread. I've been thinking about posting this for a while but I'm not sure what I'm looking for so I think it may just be for catharsis/support/reassurance.

I am convinced that my 3 year old is neurodiverse. There are quite a few things that suggest this to me and I'm not going to list them all but I'm finding the process really frustrating. Anyone I speak to seems to give me the 'he seems fine, are sure it's not just his personality/normal for a 3 year old etc etc' and whilst I understand he is young and I could be wrong, I don't think I am. He speaks (began talking very early actually) but his language acquisition really stalled around 20 months old, and I think he regressed somewhat. He's now very behind in language acquisition and does a lot of repetition of language, he has a huge vocabulary for a 3 year old but doesn't form sentences or use the words correctly. He has been referred Speech & Language and is due to be seen in July. I've also looked in to going private but that's complicated as we have an LA who frown on that and I need their support in regards to schools etc. 

I'm struggling to get any traction with getting an assessment for him - I'm pushing for this as I think he will struggle in school without support, he's due to start in September 2025. We are even struggling with things like potty training because he just isn't bothered about having a wet nappy etc and won't communicate/doesn't seem to be aware that he needs the toilet - he's not great with thirst or hunger cues either. We saw the peadiatrician at the local hospital not long ago and she doesn't want to investigate if he is Autistic yet as she feels that it's a Speech & Language need (though that doesn't explain his not playing or interacting with other kids along with other things) and said 'if he is autistic he's going to be high functioning so you shouldn't have too much to worry about' which I found a bit infuriating. He does give 'normal' eye contact and doesn't seem to have audio sensory issues, he does interact with people to some extent which he did with doctor so I felt she wrote my concerns off.

He had an almighty meltdown this morning, tot he point where he nearly made himself sick, because I tried to put him in shorts and a t-shirt for nursery, not having his limbs covered really seems to bother him. I don't know if it's a sensory thing or a routine thing (he wants to wear what he usually wears), any tips on what might help him as the weather gets even hotter? I've got some long sleeve t-shirts for him.

I'm finding the whole process so slow and frustrating and I feel a bit like he is at an age where getting support could have a huge positive impact but time is dwindling away whilst we wait for referrals to be picked up and for anyone to actually do anything.

From experience it’s really hard to get support with people who are not supportive. My son was seen at our old doctors who were happy to refer him for help and support as well as assessment. When we moved a few months later our new doctor was useless. Told me I couldn’t get assessed because “I’ve been alright for 34 years, what does it matter because I wouldn’t get any benefits” and decided my daughter didn’t seem Autistic enough to be diagnosed. But my wife fought including getting a private assessment which then showed enough evidence that the doctor had to take it seriously enough to refer her for a diagnosis. 
 

Does your child go to nursery or something and if so, what do they say? Because if they agree that could help you in pursuing an assessment.

[Chest Rockwell]

I'm useless as far as the other stuff goes but light cotton or linen longsleeves and trousers should keep him cool enough. Would he wear sandals or crocs? That could help just not having to have socks on.

[Donald J Trump]

Unfortunately, your experience is likely to vary considerably depending on a number of factors such where you are, which professionals you come into contact with and at times it seems just wild luck. One factor is consistent though in that all good outcomes have had to be relentlessly driven by parents and guardians. I've seen no instances where people have asked for support once and it's been seamlessly delivered at every stage of development. It sounds like that's something your cognisant of though, and I think you're exactly where you need to be in terms of outlook and approach. 

At times it seems like some professionals are looking for reasons not to take things forward, and that can be extremely frustrating. That's usually not the case, but it can feel that way. Age is a factor, and I find that the older a child is the easier it gets because it's less likely things will be erroneously attributed to just slightly atypical development. I detect though that you almost feel like it's a race against time, and that you want to get an effective support structure in place so your kid can hit the ground running. That's completely reasonable, and I believe that should be your aim, but the one thing I would suggest is to prepare yourself for the possibility that it might not be the reality. Often there is a difficult stage where things are slightly chaotic and a bit of a struggle. It's such a broad spectrum that in many cases they want to see in which specific areas support might be required. I'd also suggest having a list of areas where you think support would be beneficial and what it is you want, so that whether your dealing with healthcare professionals, school or nursery they're clear on what it is you expect from them.

The meltdowns are difficult and it's definitely trial and error. Chances are you won't eliminate them completely, but it helps to have a plan in mind so that when it happens, you have a kind of routine at hand to follow. With the heat, aside from the usual stuff you've probably already considered I found material to be a factor. In our case upper body was more of an issue than legs, and polyester or other similar synthetic materials were better than cotton. Everyone's different though, and some people can't see past cotton. Cool spray and a juice bottle were helpful too. Even if the actual benefits were minimal in terms of keeping cool, the routine element of "here take a cold drink, would you like some cool spray" definitely helped calm things when they showed signs of upset. They felt they were being cooled down, and usually it was effective. 

[deathrey]

@DavidB6937 thank you, I will continue to fight. I do sometimes wonder if I am cut out for the fights I anticipate lay ahead. I mean I will, but I feel tired just thinking about it.

@Chest Rockwellhe wore sandals last summer, but he also wore t-shirts and shorts last year so I will have to try and see if he will wear them. I don't know if he is being more vocal now because he is 3 or it's because something has changed in him as to why he isn't open to shorts and t-shirts any more.

@Hannibal Scorchhe is at nursery and they are pushing for support too - the nursery are very very proactive, more than what you would usually expect. They have had someone out from the LA to observe him and they agree here is something but have said it's speech and language first. Nursery have said that they think he could easily get through life going under the radar as on the whole he is fairly easy-going and quiet. He interacts really well with adults there but just plays alongside other kids and doesn't really interact with them. He's not the best at following instructions either and doesn't always want to join in with group activities - this is something I'm really worried about for school as he can get away with this at nursery but school won't let him do his own thing. I think depending on where we get with speech and language, I might look at a private assesment too though they are expensive and I need something that will be recognised by the LA. 

Meltdowns are not frequent thank God and the mainly happen at home, he's never had one at nursery as of yet. Food refusal is a huge issue though, he eats hardly anything and is an incredibly fussy eater.

@Donald J Trump I am keeping records of all my concerns regarding his development. I did actually used to write EHCP's in a former job but my area of expertise is teenagers not children under 11. I'm quite good at writing concise notes and highlighting support needs and will continue to do that. I think this is probably where my sense of urgency comes from, I know the consequences of the lack of intervention and the subsequent problems it can cause. We are lucky and all the schools around us are great but one in particular which we are not in the catchment for is excellent for neurodiversity and support and I would like him to go there, having an IEP or an EHCP (which he won't get I don't think) will mean he is more likely to get the school we want, that's the other reason I'm rushing.

[Keith Houchen]

7 minutes ago, deathrey said:

Meltdowns are not frequent thank God and the mainly happen at home, he's never had one at nursery as of yet. Food refusal is a huge issue though, he eats hardly anything and is an incredibly fussy eater.

I believe meltdowns happen more at home because it’s a safe space. It’s like, and pardon the crude analogy, really needing the toilet but holding it in for as long as possible until you’re home. Then you can let it all out without fear of public embarrassment. It’s going to happen, but it can often be delayed until it’s safe. 
 

I gained a better understanding of my partners meltdowns when I read up about “The Rumble Stage”. Spotting the triggers and avoiding or compensating them is really handy. We have “Code words” and signals for when she is getting overwhelmed. When I see the distress I know which techniques will help. It could be a firm hug, it could be leading her away from an area that’s busy, but it all stops her reaching that meltdown stage and keeping in the rumble stage. 
 

The food certainly sounds like a processing and sensory issue. Sorry to refer to my girlfriend again as it’s a totally different scenario, but when she was diagnosed autistic she was also diagnosed with Sensory Processing Disorder (SPD) and it explains so much. She didn’t eat food because of the taste, it was the texture. Simple adjustments like blending all sauces so they’re smooth and making sure different foods don’t touch on the plate, and serving with a specific plate and cutlery have all helped her with food. 
 

19 minutes ago, deathrey said:

I will continue to fight. I do sometimes wonder if I am cut out for the fights I anticipate lay ahead. I mean I will, but I feel tired just thinking about it.

I have no doubt at all that your child couldn’t have a better advocate, you’re a fantastic parent and all this just exemplifies this to be honest. Best of luck!

[DavidB6937]

1 minute ago, Keith Houchen said:

I believe meltdowns happen more at home because it’s a safe space. It’s like, and pardon the crude analogy, really needing the toilet but holding it in for as long as possible until you’re home. Then you can let it all out without fear of public embarrassment. It’s going to happen, but it can often be delayed until it’s safe. 
 

I gained a better understanding of my partners meltdowns when I read up about “The Rumble Stage”. Spotting the triggers and avoiding or compensating them is really handy. We have “Code words” and signals for when she is getting overwhelmed. When I see the distress I know which techniques will help. It could be a firm hug, it could be leading her away from an area that’s busy, but it all stops her reaching that meltdown stage and keeping in the rumble stage. 

Yeah this has always been my understanding when we've looked into the behaviours and talked to a few people. There's a fight throughout the day to keep things together and be 'normal' at school or wherever else, and then once they're home and in comfort and safe surroundings it's when they're able to let go.

It's something I never really understood before, as I was curious why she'd 'act up' at home but be perfectly fine at school, but it does make more sense once someone explains it. It's not that she's trying to be naughty or whatever at home because she thinks she can get away with it. Quite the opposite really. It's her place of comfort.

[deathrey]

His dad and I are his safe people, he knows he can melt down with us and we will love him unconditionally. I think this is somewhere his age really factors in, it's totally normal for a 3 year old to have tantrums/meltdowns so it's hard to know what is developmentally typical behaviour and what isn't. Even with his age in mind, we can go weeks without any issues. I'll look on to 'The rumble stage' for when he gets older, thank you @Keith Houchen. You don't need to apologise for referencing your girlfriend, that's where your experience lies and all experience is valid.

The food one is odd, I haven't figured out what he does and doesn't like yet. The only thing that seems consistent is that he doesn't like food that makes him dirty/is messy so nothing sloppy like soup. At the moment I can get him to eat most things of they are disguised inside a paratha (and Indian stuffed flatbread) so that's what I've resorted to doing. Last week we did a mixed veg and potato curry in a flatbread, this week it's veggie keema and peas. He will eat the 'beige' foods - likes a cheese or turkey sandwich, chicken dippers, veggie fingers that kind of thing and he will eat those himself but parathas we have to feed him -, probably because you eat them and with yogurt and that's messy - he won't touch pasta though - he will very occasionally have Mac and cheese at nursery but I can't get him to touch it at home. I definitely need to work out what does and doesn't work for him

[alanchiz]

If you've got the Nursery on side and already in the process of dealing with speech therapists, then it sounds like you are doing the right things so far.

I would see how the speech therapist goes, and see if there are any further reccomendations before panicking too much

Its frustrating, but it really needs to be done one step at a time. If the LA are already involved too, then they will make arrangements for a placement at an ASN school if needed, or possibly a supported place at a mainstream school. The Nursery will probably help here, as they will likely have to submit a report with their thoughts (as will you) to guide the reccomendations. This will/can be done regardless of whether there is a diagnosis in place or not. An official diagnosis can come later and shouldnt hold anything up yet. If you arent happy with any official decisions by them then you can submit an appeal (Thats where the real fight is!)

I would honestly try to not diagnose things yourself too much. Let the experts give their opinions, then you can argue with it if you disagree

Im only familiar with the system in Scotland, but if its similar for where you are, then you are OK for time. Everything happens in the year before school, and most things only really happen in the months before. Frustrating not being able to plan ahead too much, but thats the way it goes.

Basically, just keep doing what you are doing and dont panic too much yet.

[Devon Malcolm]

@deathrey I don't think there's a great deal I can add that hasn't already been covered by some really thoughtful posts by yourself and others.

My daughter was diagnosed just before her 5th birthday. A lot of the traits you're seeing in your son are those that we saw in her. We were fortunate in that the process for us was very fast and she was swiftly diagnosed. It sounds as though you've been unfortunate in meeting professionals who are still stuck in the draconian mindset of being 'too young' for a diagnosis and what-not. Just keep badgering them. You've got time and from the details you've posted, I'd say there's a 9/10 chance he is on the spectrum.

In terms of the challenges you're facing as relates to clothing and food, you just have to follow his lead. Don't be concerned by repetition in meals or types of food because autistic people can find routine comfort in having more or less the same thing most of the time. As for clothing, he'll just have to be hot! My daughter won't wear shorts or skirts but I think she would rather suffer a bit more than wear something she feels uncomfortable with. He may see it the same way.

All the best with the diagnosis, and even if it takes a while he's clearly got a mum who is already extremely on the ball in terms of caring for him and understanding many of the places he's coming from. Take comfort in how quick you have been to see what's going on.

[quote the raven]

Just adding my little bit to the already great advise given.

My son around 5 wouldn't eat hardly anything, To be honest it was only a year or so ago age 14 he finally ate chicken dippers. However when he was younger i took him to the doctors and got a referral to a dietician. The result was he was proscribed meal shakes packed full of calories and vitamins.

I was able to get him off of them and onto normal supplements and a more varied diet in the end but it took a while.

Keep up the good work your already doing

[deathrey]

@alanchiz ASN schools are few in England and usually they are reserved for young people with incredibly difficult behaviour or additional learning needs. I don't think my son has any additional learning needs, he can both read and recite the alphabet, can count to 30 in two different languages, has an exceptional memory (literally has all of books commited to memory and has been reciting Stockman and The Gruffalo off by heart since he was 20 months old). Mainstream schools with resourced provision bases are the model widely used in England. The school I would like him to go to is the one nursery recommended with the best resourced provision but it is one of the most popular schools in our area and is just out of our catchment. I will try not to panic, I think I'm more anxious than panicked. I'm not good at waiting and want everything done yesterday. I'm going to have to learn patience on this journey.

I agree @Devon Malcolm, at this stage, I'd be more surprised if they said he wasn't on the spectrum than if he is. The older my younger son (who is 18 months) gets, the more convinced I am of my eldest having issues. My youngest is very neurotypical and now I'm seeing how he is developing, I'm seeing all the things my eldest struggled with if that makes sense. Can I ask, as I know you daughter is older than my kids, does she mix with her siblings now? My youngest is desperate to play with his older brother but my eldest is not currently interested, I end up feeling really sorry for my youngest and I was wondering if this will ever change?

@quote the raven thanks for the reassurance, I have wondered about things like shakes. I've taken my son to the GP and the hospital to discuss his restricted eating and because he is just within the normal percentile ranges, they don't want to intervene. His eating is up and down to be fair, I think I'm feeling particularly frustrated at the moment because he is going through a bad patch. He's just recovering from tonsillitis and when he has that he refuses most foods, so we are currently at the stage where he has a couple of bites of toast in the morning, refuses lunch but then eats a little dinner. He is slowly starting to have fruits as snacks at home again though still saying no at nursery but he did have some lunch at nursery yesterday so I'm feeling a bit more hopeful.

Thank you all for your support and advice, I think I've been holding all that in for a long time and really needed to hear from other people with similar experiences. I know we all say it a lot, but this place really is a special little oasis on the internet and you are all wonderful!

Edited May 10 by deathrey

[Devon Malcolm]

7 minutes ago, deathrey said:

I agree @Devon Malcolm, at this stage, I'd be more surprised if they said he wasn't on the spectrum than if he is. The older my younger son (who is 18 months) gets, the more convinced I am of my eldest having issues. My youngest is very neurotypical and now I'm seeing how he is developing, I'm seeing all the things my eldest struggled with if that makes sense. Can I ask, as I know you daughter is older than my kids, does she mix with her siblings now? My youngest is desperate to play with his older brother but my eldest is not currently interested, I end up feeling really sorry for my youngest and I was wondering if this will ever change?

It *could* change. I think it would be unfair of me to compare my situation to yours because your experience may be different. It's tougher for you than it is for me because your children are younger and your 18 month old will not be able to understand that his brother might not want to play with him. Not because he doesn't love him but because he's different and would prefer to be left alone. I think that's your biggest challenge right now. The best way to approach that, I would say, is to try and get your 18 month old to play with his brother on terms that the latter will feel comfortable with. But again, that would be difficult, I am sure.

Like I say, it could change. It is common among autistic people that change is always a massive barrier, especially in terms of personality, but that's not always the case. From what you've said of your eldest, it sounds like it may well be a barrier. When he attends school, he will be encouraged to mix with his peers and that's something that should be persevered with. If he doesn't like that, reintroduce it when he's older and keep trying. In my daughter's case, we kept trying and trying but it's never worked for her. To the point where the school and I decided, "Sod it. She wants to be left alone. So let's leave her alone!"

Even at the more advanced ages of my kids (daughter is 15, son is 17) my son does occasionally get slightly upset that his sister doesn't want to have a bit of a play around but he understands, being on the spectrum himself. So you may always have that subject to address and reassure your youngest about, and the best way of doing that is to have the conversation occasionally (when they're older obvs!) even when the subject isn't in the air. It never does any harm.

I think back to when my daughter was diagnosed (back in 2012) and I wasn't prepared at all. It was a very bad time for me and my relationship with my ex so I wasn't really in a good place to deal with anything. So when I see you posting and also @John Matrix a couple of years ago and seeing how clued in you are and already preparing yourself and learning about what lies ahead and how to solve issues right now, I just think you're already doing so, so well. You're prepared, you're already fighting for what your kids need. It's always a learning experience and a problem-solving one but as daunting as it may (or may not!) seem right now, you are in an awesome position to deal with it all.

[deathrey]

Absolutely and I get that, just as no two people are the same, no two  autisms are the same. I was just curious as to how your kids had handled it, it's nice for me to see that your son and daughter are both neurodiverse and have different feelings on playing together.

I'll just have to wait and see how it plays out. A friend's grandson is neurodiverse and he only began an interest in friends and playing with his sister when he hit around 9 years old so I know things are forever changing and evolving.

My eldest is quite an affectionate child, he loves to hug his brother goodnight and insists on having a bath with him every evening. They were playing in the garden with my husband this afternoon and I looked out of the window and saw them both playing with the water table which was quite nice. 10 seconds later they were fighting over who gets the plastic watering can so I guess these things may evolve more if they both learn to share. Maybe my husband and I need to act as intermediaries to facilitate together play whenever the eldest shows an interest.

I guess some of this is managing my expectations too. I am very close to my siblings and had envisaged my boys having a very close relationship as well, especially given how close in age they are. I have to accept that this may not be how their relationship plays out and they may both be happy that way.... And I just need to deal with it! 

Edited May 10 by deathrey