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Early intervention 18m+ - please help and handhold

18 replies

fourrabbits · 01/05/2024 20:37

I’m very concerned my 18m DS has failed the M-Chat and has a number of ASD indicators (no pointing, no gesturing to gain/share attention, limited eye contact, extreme restricted eating, stomping constantly, meltdowns when frequently not understood (has about 10 words he’ll use when promoted), fearful and disinterested of strangers and other children).

I’m devastated for him and his and our future, that it feels he’s in his own world that he has no desire or thought to share with me.

I understand the waitlist for diagnosis in England is many years and rarely followed by support 😥

I’m looking to see what early intervention I can do to support him as much as possible (happy to do so privately) - to alleviate and manage some of the difficulties and hope they lessen. Can anyone recommend therapies, books, professionals, activities etc please?

Thank you so much

OP posts:
Headfirstintothewild · 02/05/2024 11:26

Has DS been referred to portage, SALT, OT and dietetics?

It is worth checking if there’s a local SEN playgroup and some special schools hold SEN playgroups/sessions so it is worth looking if any locally do.

fourrabbits · 03/05/2024 12:17

Headfirstintothewild · 02/05/2024 11:26

Has DS been referred to portage, SALT, OT and dietetics?

It is worth checking if there’s a local SEN playgroup and some special schools hold SEN playgroups/sessions so it is worth looking if any locally do.

HV has said a wait and see approach and won’t refer yet. The referral has been rejected from dietitian previously due to DS tracking weight wise.

I will look at playgroups.

Anything else I can do to help?

OP posts:
Headfirstintothewild · 03/05/2024 13:49

Check if you can self refer to SALT, OT and Portage. In some areas you can. If you can’t, ask the GP to.

I would also request another referral to dietetics. DC can have ARFID and be a healthy weight. Does DS take vitamins?

Does DS attend nursery?

fourrabbits · 04/05/2024 20:07

Headfirstintothewild · 03/05/2024 13:49

Check if you can self refer to SALT, OT and Portage. In some areas you can. If you can’t, ask the GP to.

I would also request another referral to dietetics. DC can have ARFID and be a healthy weight. Does DS take vitamins?

Does DS attend nursery?

I’ll ask for a referral.
Yes to vitamins and he’s at nursery 3 days pw.

I’m not sure how else to help him but watching the gap widen between him an his peers is soul destroying

OP posts:
Pigeon66 · 06/05/2024 21:47

I found the book 'More Than Words' by Hanen extremely useful to learn how to interact better with my son. We also did free online therapy with a University in Florida, which I can dig out info on if you want to PM me.

Sensory occupational therapy might be useful too. We did some early intervention private PRT stuff around that age, but I wouldn't recommend it on reflection. We found Portage great, and if there are SEN sessions at your local children's and family centers, those are good too. If there is a local autism group for parents, join that - it will be invaluable for recommendations and meeting loads of great people.

My son was also very 'closed off' and in his own world around that age. He is 5 now and has opened up so much - it's an absolute joy to experience. He enjoys our company and we have so much fun together. Obviously he still has difficulties (including extremely restricted eating). I worried so much when he was younger, but things have got so much better for him and for us. He has taught me so much and the only thing I would change is enjoying him more when he was younger and not worrying so much (easy to say in retrospect, I know!)

Scratchybaby · 09/05/2024 14:58

The book I always recommend is An Early Start for your Child with Autism (should be easy to find on Amazon). It's really parent friendly and provides loads of ideas for activities you can do with your toddler to encourage joint attention and communication - essentially if it feels like your DS is a bit "in his own world" it's how to get in that world with him and connect, and help him eventually step out of it as much as he can. It's based on an early intervention approach called the Early Start Denver Model. There have been other approaches tested since the ESDM came out, but as far as I understand they seem to have a core of making strong connections with the child on their terms and building outwards, based on their strengths and interests.

For us, when our DS was a bit older than yours (I wish I'd realised earlier that something was up!), that was getting involved in his sensory seeking and repetitive play activities with him. For us that was literally arranging socks together into patterns. It was on his terms, to make that connection through play, and gradually we built in turn taking, language, new play ideas, etc. At 5yo he's much more out of his shell now - lots of language (but still with echolalia), more interest in peers and constantly wanting us to play with him, able to make jokes (or his weird version of jokes 😂) learning his phonics and loves swimming. He's still autistic, but he's come a REALLY long way in 2.5 years and I feel way more optimistic than I did in the beginning.

There is loads of evidence out there to show that early intervention can make a big difference to an autistic child's developmental outcomes, and you are acting EARLY. Which is AMAZING! Unfortunately NHS or LA support takes a lot of fighting to get, and you won't get anything quickly enough for there to be any meaningful early intervention from them. So to be blunt this will be a lot of work for you. There's SOOO much to learn but if you're right and your DS is indeed autistic, then the fact you are starting to learn how to support him so early should make you feel really proud that you are doing everything you can for him, and you have reason to be optimistic.

PlantMadMum · 10/05/2024 12:41

We are a bit ahead of you in the system OP, so maybe this information will be helpful. My DC now 2.5 is receiving early intervention for developmental delay along with autistic traits. We have been referred for speech therapy, pediatrics, a hearing test, portage and children’s centre contact. Our health visitor has been very good in making sure that all those referrals have been made and we have been in contact with all but SALT but the wait times for audiology are crazy right now. There is also the possibility of an ND referral for autism but we are waiting to gather more evidence to see if that is needed at this stage.

We also hired a private speech therapist who offered to give us an initial consult, and we liked her and her approach, so we paid for some sessions with her to work with our son and try and get the best out of his emerging speech. She gave us some ideas for exercises to do with our son outside of sessions. Flashcards have been great because my son is receptive to correlating images with words. My son is also hyperlexic so literally anything with letters, numbers, shapes, colours are things I can use to engage him. I always make sure I talk very clearly, even loudly sometimes, and one word instructions. He is also very sensory seeking, so tickles, bubbles, cuddles, anticipation, swinging etc are all things that help him regulate, which is so important for his emotional health and wellbeing. I also give him vitamin supplements. I always make sure to do things at his pace and do not try to force anything. And it’s about knowing your own child and trying things out to see what works and what doesn’t.

What I would say however was that whilst I always had the suspicion that my son was not developing typically, which I voiced at his 6 month review, just from my experience a LOT can change between the ages of 1.5 and 2.5, and a lot HAS changed. At 1.5 he was non-verbal and would run and spin around ALL DAY long then have meltdowns cause he was overtired (no matter how much I tried to intervene and help him regulate) and now he is a different boy altogether. He was still developing, just atypically, and hammering the spinning schema!

My son has mellowed out SO much since 1.5 years old. He’s gone from non-verbal to pre-verbal with some words within that time, and with that he has calmed way down. Meltdowns have reduced in frequency and his world has started to open up much more now that he understands more of what’s going on around him along with the understanding of key phrases and simple words. Those years before he turned 2 were honestly super stressful and I had very little idea of what was going on at that time, but I do think the referrals and early intervention are being put in place at the right time for him at this point. At 1.5 he would have been way too young to be receptive enough for speech therapy to have any effect for example. He would not have been ready for nursery at that time either. He just wasn’t ready back then, and I think I need to remember to give myself some grace when it comes to that side of things, I’ve learned that children will only do new things when THEY are ready. Be patient. Work with the child you have.

They also do a more in depth developmental review between ages 2 and 2.5 because that’s the age when specific developmental milestones can indicate better where appropriate referrals can be made where there might be a delay.

One thing I would say is that I chose to have my son attend a setting too, and you do not need an EHCP for any setting to recognise that a child may have additional needs. My sons nursery for example already knew he was SEN before he even attended as they had communication from my health visitor, and we will all have a meeting when he turns 3 about the next steps for him. He seems more than happy to be around other children at the moment and so I don’t have too many worries about him attending school, but we are still in the early days and we take it as it comes. It’s sometimes hard to see others his age doing what seem like super advanced things when compared to my own child, but I have now got to the point where I try to focus my energy on my child and no one else’s. Typical development is also not a sign that a child will turn into a well-functioning adult. Remember that.

You could always ring your local health visiting service and voice your concerns and ASK them to log your concerns down. Also the local children’s centre have tried to accommodate us pretty well too so worth contacting one if you haven’t already done so. All children’s centre activities should be free of charge. We book out the sensory room there and my son just enjoys exploring.

fourrabbits · 26/05/2024 20:04

Sorry for messaging but wondering if anyone could help / handhold. Having a really bad time with my DS - he is incredibly disregulated and withdrawn and I don’t know what to do. Refusing to eat anything, stimming, no meaningful speech, can’t seem to understand us or convey anything anymore. Screaming and meltdown if someone even dares look at him eg at the park, can’t be even near another person so I feel trapped in the house. I feel awful watching him and incredibly sad that he will likely be like this forever, never be normal - chat two way, eat a proper meal, have any social skills, function in everyday life. I would do / pay/give anything to take this away from him but I can’t get him to regulate and stop regressing it seems. Everything is broken

OP posts:
Headfirstintothewild · 26/05/2024 20:30

I’m sorry things are so difficult right now. I would speak to the HV and GP again.

Did you check if you can self refer to SALT, OT, Portage?

When you say DS won’t eat anything, do you mean literally nothing or just not meals/a wide range?

You could see if Home Start can support you.

To aid regulation have you tried sensory toys? New Life do play therapy packs which are worth looking at. Also try some of the things in this booklet.

How is DS in nursery?

fourrabbits · 27/05/2024 16:07

Headfirstintothewild · 26/05/2024 20:30

I’m sorry things are so difficult right now. I would speak to the HV and GP again.

Did you check if you can self refer to SALT, OT, Portage?

When you say DS won’t eat anything, do you mean literally nothing or just not meals/a wide range?

You could see if Home Start can support you.

To aid regulation have you tried sensory toys? New Life do play therapy packs which are worth looking at. Also try some of the things in this booklet.

How is DS in nursery?

Edited

Thank you for replying. I cannot self refer and the waiting lists for OT / SALT are over a year.

DS has never eaten an actual meal. At home or nursery. Over the long weekend he has eaten one bowl of cereal and a few crisps. He won’t even look at anything without screaming.

Thank you for the booklet link, I am trying to regulate him but he is impossible to reach, he cannot communicate or engage. At nursery he is withdrawn but manages, it seems like he is masking and then at home it is awful. I regret his and my existence. I don’t know what to do.

OP posts:
Headfirstintothewild · 27/05/2024 17:50

Even with a long waiting list for SALT, OT and Portage it is worth asking the nursery, HV or GP for a referral. Go back to the GP and push for referrals to paeds and dietetics, too.

What support is the nursery providing? Have they spoken to the Area SENCO about how best to support DS?

fourrabbits · 27/05/2024 19:11

Headfirstintothewild · 27/05/2024 17:50

Even with a long waiting list for SALT, OT and Portage it is worth asking the nursery, HV or GP for a referral. Go back to the GP and push for referrals to paeds and dietetics, too.

What support is the nursery providing? Have they spoken to the Area SENCO about how best to support DS?

Thank you. I will ask again for the referral but the HV has said there is a huge wait. The preschool ASD service has also stopped in my region so I don’t know what’s next.

Nursery have provided more safe foods (he has 5) in a different room but he is still not consistently eating them anywhere. His weight is OK because they are high calorie foods (eg he would eat chocolate hobnobs non stop and nothing else) so dietician won’t accept the referral. His behaviours are more intense at home and I am struggling a lot.

I feel like his brain is dying with ASD - he just stims or screams with no understanding or communication. I can’t remember the last time I saw him smile. I can’t cope.

OP posts:
Headfirstintothewild · 27/05/2024 19:19

Even though there is a huge wait you still need to be referred otherwise you are still going to be in need of a referral a year down the line then still have to wait with a year wasted. A long wait is even more of a reason to refer now. If the HV won’t and the nursery can’t, speak to the GP.

All LAs have an Area SENCO the nursery can ask advice from. You can also request an EHCNA. Some LAs have specialist nursery places too.

Dietetics is about more than weight, so push for a referral, complain &/or ask for a referral out of area.

Scratchybaby · 28/05/2024 08:52

Are you able to take some time off work and keep him home for a bit? It sounds like he needs a rest and a reset if he's dysregulated for much of the day. At the risk of sounding trite, in my experience with our DS the biggest help has been reducing as many demands on his sensory system wherever we can, identify what helps him fill his cup - calm down, get regulated, find joy - and support him to do that as much as he can so that when we do put demands on him, he's got more in the tank to meet those demands. Stimming can be a big part of that.

Once he's more regulated, then hopefully you can gradually put more back on him bit by bit, when he's got a bit more capacity. For example with the food, could you get some fortified cereal in him so he's at least getting some essential vitamins? We also got refused support from the NHS dietician in part because he ate more than one food (honestly) and because he'd eat at least a bowl or two of Rice Crispies a day, meaning he probably wasn't vitamin deficient (I'm not saying this is where I'd like to be, but hopefully it at least means DS isn't malnourished). Or could you take him on walks where he won't have to mix with other people so he's at least getting fresh air and exercise for now? What does he like doing - can you do more of that? For us, this genuinely was sensory seeking by sorting socks at 18 months, but we weren't stuck there forever!

This is a hard age, but if you can help him fill his cup you'll be much better placed to start focusing on all the other areas where you'd like to make progress. Over the long term it will be about building a strong core of knowing how to help him regulate, and helping him build outward from that.

Littlepip02 · 28/05/2024 14:54

Demand your health visitor puts in the relevant referrals now, my son was referred at 12 months and diagnosed at 3 years 4 months it's never too early to have support put in place

fourrabbits · 28/05/2024 16:13

Scratchybaby · 28/05/2024 08:52

Are you able to take some time off work and keep him home for a bit? It sounds like he needs a rest and a reset if he's dysregulated for much of the day. At the risk of sounding trite, in my experience with our DS the biggest help has been reducing as many demands on his sensory system wherever we can, identify what helps him fill his cup - calm down, get regulated, find joy - and support him to do that as much as he can so that when we do put demands on him, he's got more in the tank to meet those demands. Stimming can be a big part of that.

Once he's more regulated, then hopefully you can gradually put more back on him bit by bit, when he's got a bit more capacity. For example with the food, could you get some fortified cereal in him so he's at least getting some essential vitamins? We also got refused support from the NHS dietician in part because he ate more than one food (honestly) and because he'd eat at least a bowl or two of Rice Crispies a day, meaning he probably wasn't vitamin deficient (I'm not saying this is where I'd like to be, but hopefully it at least means DS isn't malnourished). Or could you take him on walks where he won't have to mix with other people so he's at least getting fresh air and exercise for now? What does he like doing - can you do more of that? For us, this genuinely was sensory seeking by sorting socks at 18 months, but we weren't stuck there forever!

This is a hard age, but if you can help him fill his cup you'll be much better placed to start focusing on all the other areas where you'd like to make progress. Over the long term it will be about building a strong core of knowing how to help him regulate, and helping him build outward from that.

Thank you I really appreciate the response. He has had some time off nursery and it seems that’s when he really falls apart/let’s it all out at home. I genuinely can’t think how to regulate him - his attention is tiny and he just acts in his own world, repeating random noises and stimming. He will sit for TV but then screams when it ends. Very upset at going out the house. He is starting to hit at me too and scream if I try and hold him.

I’ve got a HV appointment this week so will push again for a referral but from what I’ve understood a diagnosis isn’t followed by support. There’s no treatment for his disability and I don’t want to live like this. He’s never going to be normal or live a normal life it seems. I feel so suffocated by sadness at what an awful quality of life this is for both of us

OP posts:
Scratchybaby · 28/05/2024 16:44

If you were to leave him to his own devices, would you be able to observe what he gravitates to? 18 months is so young, I know it's hard to decode what he's thinking or what he wants or what's making him happy/sad, but if you can find anything to zero in on, no matter how crazy it seems, it can really help you get that first foothold. I keep bringing up that sock thing because it was so random, and wasn't what I at the time recognised as meaningful play, but it really was the start of building that relationship with our DS. Stimming with socks (moving them in front of his eyes, setting them down one by one) was his happy place and we built on that.

If you are correct and this is autism, then I really would also recommend that book An Early Start - it includes advice for children that are at the same starting point as you. Definitely get all the referrals you can, but as you say the wait is long and to be honest, the advice and "support" has been pretty crap in our experience anyway (could be different in other LAs). There is so much you can do, and Mumsnet is - in my experience - actually a really good place to start. People on the SN forums generally all just want to know what worked for other little ones, and are quite open about swapping tips, approaches, recommended reading, etc. It's the stuff you'd (partially) get from all those referrals, but you don't have to wait a year or two to get it!

Here's a link that might give you some hope - I want to be careful not to claim there's a "cure" for autism - which this article isn't claiming - but this shows just how big an impact early intervention can have on improving outcomes for autistic individuals https://www.manchester.ac.uk/discover/news/therapy-with-babies-boosts-social-development-reducing-clinical-autism-diagnosis-by-two-thirds/#:~:text=A%20parent%2Dled%20intervention%20that,by%20CliniKids%20at%20the%20Telethon

In short, don't wait for referrals for what will ultimately be crap, outdated advice that will take years to arrive anyway (but still get the referrals, you'll want them for when DS starts school at least). The NHS and LAs don't have the money for meaningful early intervention but there's loads you can do now yourself to make a big difference.

Therapy with babies boosts social development, reducing clinical autism diagnosis by two-thirds

This Australian study trialled a parent-mediated therapy, iBASIS-VIPP, which was developed by the study’s UK collaborators, led by Professor Jonathan Green from The University of Manchester.The use of iBASIS-VIPP reduced clinician autism diagnoses at a...

https://www.manchester.ac.uk/discover/news/therapy-with-babies-boosts-social-development-reducing-clinical-autism-diagnosis-by-two-thirds#:~:text=A%20parent%2Dled%20intervention%20that,by%20CliniKids%20at%20the%20Telethon

Headfirstintothewild · 28/05/2024 17:36

There is no cure for autism and a diagnosis won’t change DS, but that doesn’t mean absolutely nothing can help. For example, SALT, OT, other therapies, ed psych advice, EHCP, adjustments at home can all help.

@Scratchybaby if the local referral was rejected you could request a referral to a specialist service such as the ARFID service at Maudsley or the feeding and eating service at GOSH. Neither have exclusion criteria of eating more than one food or not being underweight.

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