Help please?

[CoffeeLover90]

Hi, I may be a little premature here, there's been no diagnosis but I can feel in my heart there will be.
DS has struggled with speech, understanding and (at times) behaviour. I raised this with HV a long time ago. He started nursery in September, I discussed concerns with them many times. In January they said they would raise the speech referral for me and also explained DS showed traits of autism. I've since read up and discovered there's more, which weren't brought up at nursery. Was end of June before we saw speech therapist. Within 10 minutes of being in the room she confirmed he was most likely on the spectrum but couldn't diagnose and we were referred to pediatric. Been told to expect an appointment in a few months. In the meantime I discovered DS has a 'secret language' only I understand as its very hard to explain but I can actually have conversations with him sometimes. His understanding is better. His behaviour had been in improving but during the last few weeks there's been quite a set back. There isn't always an obvious trigger that he's about to tantrum and no obvious changes, sometimes he's happy to get out the bath, other times not so I just need to prepare for tantrums constantly. I was told by therapist to just keep doing what I'm doing but surely there's more? Something I can do to help? I've looked online, the autism society I found mainly has guidance for adults and a lot of support groups for parents are for those already diagnosed. I've no idea if I'm right or wrong half the time. My friends with kids this age are all NT, although supportive I don't feel like they fully understand how much I struggle sometimes.
I'm sick of sarcy comments from some family too.
I will say DS is the loveliest boy. He will cuddle (on his terms) and he's always wanting to help. He's very proud of himself when he gets things right and shows an interest in other children. I just want what's best for him but all the research in the world isn't helping, I was hoping some first hand experience would.

Hey OP,
I can only share my experience.
waited almost 2 years for a diagnosis and even then, pretty much on your own afterwards
I found that support from real life mothers most helpful, is there such a thing where you live? Any SEN events you can take him to? Some play centres have dedicated sessions at set times.
have you applied for his EHCP? You can do this yourself and don’t need to wait for the nursery.
I would recommend the Hanen books; it takes two is good. Lots and lots of activities for you to try. If doable, you can try weekly/fortnightly private SALT sessions and the therapist gives you homework in between sessions. I’m not sure what your situation is like re work but it really feels like a FT job trying to just research everything. It’s exhausting and I feel like I’m often failing my DD as I’m not doing enough.
I’ve also deferred her starting school as she’s just not ready.

Thanks for the response.
No SEN events I've been able to find other than those who actually have diagnosis.
DS has just turned 3, he enjoys his preschool nursery and is going back next month instead of, the more formal, school nursery I'd originally planned. He should be on 30 hours but I'm keeping him on 15 for now.
The EHCP I'd thought was for starting school. I'm hoping he's seen before next September so we can get things in place for starting school. I've already researched some in the area and luckily, my original choice has a fantastic response to kids with additional needs. Plenty of teaching assistants, smaller class sizes and varied learning.
I'm working part time, four late shifts but about to start Saturday and Sundays only on long shifts so I get more time through the week, anticipating appointments and hopefully be less tiredness.
I'll give the books a try but private isn't an option I'm afraid.

Try Eventbrite and search EHCP, they often have lots of free workshops. Also search for ‘autism’ ASD and see if anything comes up. Many are online and hopefully where you live.
my daughter’s continuing with her nursery and just applied for EHCP So can be used in nursery; hopefully for some 121.
in the meantime, you can try things like attention bucket, encouraging turn taking, intensive interaction (what SALT recommended to my non verbal 4yr old)
i listen to podcasts and have found Dr Mary Barbera helpful.
on YouTube-speech scoop and walkie talkie speech therapy.
id also recommended taking therapy through my GP as I was finding it all overwhelming. That was quite helpful

Hi OP no real advice but have DD a similar age not yet diagnosed but we very much expect it

she is not really communicating in any way, so from where im sat that seems like a great thing that you can somewhat understand and hopefully promising as a foundation for verbal communication from your DC

DD is also cuddly which I’m so glad of esp when it’s really tough.

im trying to keep a diary (/iPhone notes) of when she has meltdowns (I categorise as tantrum lasting more than 30min when we seem totally powerless to help). I’m hoping will eventually see some patterns but at the moment I feel quite clueless still

also trying to understand her sensory needs more. There are some useful sites and insta pages if you’re on insta (not sure if you DC struggles with sensory input). Often DD seems very ‘unregulated’ and I think much of it is linked to senses (still figuring out how tho..)

and I also plan to try and get to grips w her awful sleep, probably trying melatonin as I think if that improves it might help a lot of other areas.

Totally relate to what you say about friends and fam. It can be so isolating especially during this phase when you know deep down but don’t have a diagnosis to stand behind. Do you have a supportive DP?

Tantrums or meltdowns? There will be a trigger, it just might not be obvious or related to what is happening at that precise moment. Keeping a detailed diary and ABC chart will help you spot the triggers.

Scope offer a mentoring programme for parents of DC undergoing diagnosis.

There will most likely be a parent carer group locally, you don’t need to wait for a diagnosis to get in contact with them. Some special schools have a play group too.

EHCPs cover nursery as well. If you want an EHCP in place prior to starting school you should apply for an EHCNA now. The process takes 20 weeks, but that is if you don’t have to appeal which sadly many do, some more than once. Appeals are currently taking 6/7+ months. In the meantime the nursery can apply for early years inclusion funding if they need more funding to meet DS’s needs.


Do you claim DLA? If not, apply. If you do the nursery can claim Disability Access Funding.

This website and this booklet are helpful for sensory differences.

Thank you for the links and advice. Very much appreciate it.
I'll be honest I don't understand the difference between a tantrum and a meltdown. I've actually signed up for an autism awareness course to educate myself as I'm dubious of reading too much online, some are contradictory.
There will be triggers but feels like one minute he's happy to do something then in the next instance of doing that same task, he'll throw himself on the floor and cry.
I've never looked into any financial help as I've assumed he will need a diagnosis first and was just looking for practical support in the meantime.
Unfortunately, I don't think a diagnosis will help with some family members. They're quite old fashioned and just see these things as an excuse for naughtiness. I don't agree at all. I'm prepared and willing to stand my ground for both of us.
No DP, his dad is not involved, he's an unsafe abusive individual to put it lightly.
I'm going to look into scope tomorrow and I'll contact some local groups too. I've read a couple of threads on here and noted some videos and books which may come in useful.
I just want what's best for him, of course, I want him to be happy and sometimes I don't feel he is or how to make it better.

I’ve got to say finding this community has helped keep me sane as I haven’t found anyone IRL with needs like my son’s.

As for the wider world, you just get a thicker skin through experience. In some ways that’s a bit easier as they get older because it becomes more apparent they they are SEND not naughty.

Absolutely apply for all the help you can get, DLA and get the nursery to do an EHCP.

I think:
tantrum = being naughty and not wanting to comply with expectations / behaviour rules. A normal part of growing up.

meltdown = SEND issues, not coping with change / sensory issues and feels overwhelmed and can’t cope. Not a typical experience for most children.

Tantrums and meltdowns can, on the surface, look similar, especially when it is all new or to those who don’t know the child. A tantrum is generally part of the typical development of a young child, in their control and is aimed at achieving a specific goal. Whereas a meltdown is not within their control and is often a result of being overstimulated, often you can learn to spot the warning signs and triggers in your DC.

There will be triggers but feels like one minute he's happy to do something then in the next instance of doing that same task, he'll throw himself on the floor and cry.

The trigger might not be related to the task itself but e.g. what else has happened that day/week, the environment, what he has eaten, who else is there…

You don’t need a diagnosis for DLA as it’s based on needs rather than diagnosis. The same for an EHCP, early years inclusion funding and social care assessments.

I can usually spot when he's about to 'kick off' and a lot of the time I can prevent it by distracting. I found he hates getting out of the bath so I always empty it first, then tidy up the toys while he's in the water. Once empty sometimes he's happy to get out other times no. But as you say I'm learning as I go.
The DLA I'm not particularly interested in,I don't feel I care for him more than any other child but I do find it more difficult as there is always a different way of doing normal every day things, if that makes sense. I just need/want some practical help for us.
Nursery have had their own care plans for him and have already prepared one for him on his return. I've been following their plans at home too, it's really helped the last few months.
I had thought a diagnosis was needed for EHCP at school though, I'll ask if Nursery knows of this for our area when he goes back. Be great if not as then I can still make sure he's supported.
It's good to know I'm not alone though and there is ways of getting through it.
Thanks to all for replying.

No, a diagnosis isn’t needed for an EHCP. It would be unlawful for your LA to say it is.


Transitioning from one task to another is difficult. Getting out of the bath may be a sensory nightmare for some. Do you give DS a count down warning or use e.g. a sand timer? Does DS know what’s coming next? Do you have a big soft towel or a hooded towel or for some a slightly rougher towel tightly wrapped around them while you give them a firm squeeze helps. Some find proprioceptive input prior to a bath helps them cope. Is there something he enjoys doing that he can do once out of the bath and dressed?

I would be amazed if you didn’t care for DS more than you would a typically developing peer. Actually, from this thread it is clear you are. I imagine you are doing a lot without realising you are &/or realising it counts. If you change your mind about DLA the Cerebra guide is helpful.

I@CoffeeLover90 I'm intrigued - what's the "secret language"? My DS is 3.5 and after a year and a half after I first brought up concerns, we are FINALLY going to see a paed (though only a video call) to get the ball rolling on a possible ASD diagnosis. I absolutely hear you and your frustration with both the support on offer, and with unconvinced/unhelpful family.

I ask about the secret language because my DS uses a lot of echolalia, mixed with original speech and we're similar - me and DP understand and converse with him better than anyone else and there are times you could call it a secret language. If your DS uses lots of phrases from books and movies or just phrases he's learned from you, you may find info on Gestalt Language Processors (GLPs) both helpful and reassuring (many or most children with ASD are GLPs). There's a website/instagram account called Meaningful Speech that breaks down really useful info into bite sized chunks (actual evidence-based info, not just fluffy social media reassurances lol) that are accessible and practical for parents. Also really encouraging because if this is what your DS is doing, it focuses on how to help them progress to full language acquisition and that they are indeed on that path to getting there.

There's loads of great info out there, and tbh, I've found Mumsnet way more helpful in finding it than waiting for the negligible help I've had from Early Help/SEND team, the HV or nursery.

Hi OP,

Based on our experiences, here are some things I'd recommend.

If he gets a diagnosis, apply for DLA for him and use the money to help fund some private SALT treatment. We did this for our son from age 3 to age 6 and his speech has moved on a lot. They also gave us activities to do at home.

Agree with PP that the Hanen books are good. ( We used More Than Words) They are pricey but you can often find copies on EBay.

If there is a Barnados Children's Centre anywhere near you, see if they have any support on other or can connect you with local SEND groups.

Google Incredible Years programme and read up on child directed narrated play. We did two 10 min sessions of this a day and it had a big impact on our son's engagement with us.

Possibly explore other means of building communication (eg PECS or using pictures of some kind to aid communication.)

For what it's worth. My son was massively impaired at both speech and language comprehension at pre-school. (But has made steady progress since we started using all of the above. He is now 8.5. His speech is probably about 2 years behind his peers in terms of complexity. But he is verbal, continuing to make progress and managing in mainstream school. They can come a long way in the early years...

Thanks all for the responses. I wasn't told I'd need a diagnosis for ECHP I just assumed. His nursery already have things in place for him, I meant for when he starts school. So that's very helpful to know and takes a weight of my mind.
If he does get diagnosed it's a really good idea to use any dla for private sessions, I didn't even think of that. I have private health care myself through work and could get a discount to add DS (even discount is currently too expensive)
His language is so hard to explain, a lot sounds like babbles to an outsider but he uses the same tone as I use for things such as 'ready, steady, go' he also reads his stories in his language. You can make out a lot of what he says as it is mostly mispronounced words. He uses some babbles for different things, example when crossing the road ba baa means back on the path, putting a toy away ba baa means put it back. He's coming on really well these last few months. Speech therapist only said to keep doing as I am and they'll be able to do something if/when he's diagnosed as they'd need to approach at a different angle. He counts to 10 in his language, can point out pretty much any animal, even things such as lamas, beavers, flamingos. He's so clever in a lot of ways. With new toys he always inspects every part, as if he's trying to work out how it works. It's quite amazing to watch although very hard to explain. I've collected photos and videos for any appointments he needs as it's easier to show some things.
Tantrums are not in particular leaving a situation, I'd used that as an example, they can just appear randomly. It's hard knowing he's upset but I can't fix it.

You don’t need to wait for a diagnosis to apply for DLA.

Before committing to private health insurance check what it covers, many don’t cover ASD related expenses.

You have been fobbed off with SALT. SALT can be included in an EHCP.

I'd already checked with the health care provider and it can be included.
I'll look into the DLA though.
Nursery agreed that speech therapy could have begun sooner as some help was better than none but their SENCO is helping as much as possible with regular meetings with me. It's one of the reasons I hadn't changed his nursery this term as originally planned. Unfortunately it seems that no matter how much I chase these services they just don't seem to move forward. Had a letter from pediatrics this weekend to say they received the referral (put in end of June) but due to waiting list there were no appointments and they would be in touch in the following weeks.

Unfortunately it seems that no matter how much I chase these services they just don't seem to move forward.

For SALT, an EHCP can help with this. SALT (along with other provision) can be included in the EHCP therefore it must be provided.

The nursery SENCO could have begun the EHCP process. They could have also applied for early years inclusion funding &/or asked the Area SENCO for advice.

They have done this. It was nursery who completed the speech referral in the end. I'd been raising concerns to health visitor since he was 13 months. He's now nearly 3 and a half so I've gave up with them. I'll ask nursery what next steps will be as I'm showing this recent letter to the SENCO anyway. I'm not afraid to chase anything up myself, got practice at it now. Just find the whole thing ridiculous.
Also reading up on dla it sounds like he will need a diagnosis first as it mentions health needs and appointments etc. You can't then reapply for another 6 months if it's declined, and even with a diagnosis it seems this may still happen, so I'd rather wait on that incase it delays things further.
I do think the routine of nursery will get him back on track though. I had a fall at the very beginning of the holidays and gained a nasty sprain so I've not been able to get out and entertain him as much as I had planned to. This probably added to his stress as he's very active normally and loves to be outdoors. There was then an issue with his sleeping (or lack of) for a couple of weeks, which has never, ever been a problem. Kids slept through pretty much since 8 weeks old!
Thanks for the advice everyone.

Holidays can be hard enough without extra problems, I hope you are healed soon.

So the nursery have applied for an EHCNA, early years inclusion funding and asked the Area SENCO for advice? If so, why are you waiting for assessments? The assessments should be part of the EHCNA process without sitting on normal waiting lists, and subsequent therapies should be part of an EHCP if one is issued, again without sitting on normal waiting lists.

Also reading up on dla it sounds like he will need a diagnosis first as it mentions health needs and appointments etc. You can't then reapply for another 6 months if it's declined, and even with a diagnosis it seems this may still happen, so I'd rather wait on that incase it delays things further.

No, you don’t need a diagnosis for DLA. DLA is based on needs rather than a diagnosis. The Cerebra guide specifically states this. There’s also no time limit on reapplying for DLA if you are declined - see this benefits and work link - old link but still relevant.

Thank you, I'm not sure how it all works to be honest. I know nursery key worker showed me the plan so they use visual aids, timers etc and on another part it included funding costs which she told me to ignore as it's for them to apply for. She then said 'this plan' continues onto September as I'd already confirmed his place for that term. The SENCO lead was his key worker last year but will be involved in his care even though he will no longer be in the toddler room (they have one SENCO) and we'd still get regular meetings. Whether that's actually an ECHP or not, I may have misunderstood. What I'm currently waiting for is a pediatric appointment to start diagnosis. He's seen specialist speech therapist once, she couldn't diagnose but within 10 minutes of being on the room told me to prepare for it as he'd already shown a few traits within that time.
I'm not sure what exactly is happening. I feel like I've been told 'he might have this, don't worry, he might need extra help' and then just left to get on with it. We'll, what extra help? How can I help him? What does he need? Will he be held back? Nothing. I'm going to get in touch with the places recommended here just for advice on maybe I need to approach things differently? It's far too much to type in here but it's left me questioning my parenting and if I have the skills to do this. I've signed up to an autism awareness course, awaiting a start date but even that is centered around adults with the condition. There are others centered around children but they said I need to complete this one first.

It doesn’t sound like DS has an EHCP, you would know if he had one. It sounds like DS is on SEN Support. IPSEA and SOSSEN have more information on their websites, including a model letter you can use to apply for an EHCNA yourself. They also have advice lines.

You don’t need a diagnosis to apply for an EHCP. SALT can’t diagnosis, but they can provide intervention prior to diagnosis and SALT provision can be part of an EHCP.

Sounds like EHCP is the next best step, from there I can get SALT involved, as this is his main struggle it will help massively and in the meantime chase up appointments with pediatrics.
I'll ask a benefits advice service for help with the DLA, it's something I've never applied for before so it'll be best to get support with that.
You have been a massive help, thank you so much.