DS on the Pathway for Autism - Feel like I'm having a breakdown

[LottiePa]

DS is a few months away from his 3rd birthday. He our first child.

When he was about 18 months old I became concerned of his lack of speech. He hit all his milestones and had a few words but nothing in comparison to other children his age (he still only says the same words, Mum, Dad, Yes and No)

I raised it with the HV and was told don't worry and we'll discuss at his 2 year check. Nursery also flagged this as concerning (was unceremoniously told by a member of staff at drop off that she thought he was autistic)

At his 2 year review the HV said she was worried and referred him to SALT and for a hearing test.

Hearing test came back fine, no issues. After a 16 week wait for SALT, during a one hour meeting we were told there was an issue and given some targets to review in 6 months.

Senco from nursery are aware, they've started a Myplan and referred to a special needs nursery in our area. He had an hour assessment at the special needs nursery and we were then told they wouldn't offer him a place as he was too advanced in comparison to the other children in their care, in his age group. In that he could complete puzzles, count on his fingers, identify colours and was heard saying "Yes"

It's all so frustrating. I feel like I've been saying there's something wrong for over a year now but no-one will help. SALT was a waste of time completely, they just wrote a pointless report and gave him some targets that he won't met and in 6 months time he still won't be speaking and now the Special needs nursery have refused to help too.

After my pointing this out to the special needs nursery, they then offered him 5 hours a week for an undetermined amount of time but I feel like this has only be granted because I shared my frustrations at the lack of support.

Following this, they have referred him to a Paediatricians to begin a pathway diagnosis for ASD, because it's being done through them, it should take 6 months.

I'm so depressed and drained from the whole thing. I can't stop crying and feel just so hopeless. DS is now refusing to eat both at nursery and at home and is losing weight and I feel like I have no-where to turn.

If he is autistic then so be it. I just need him to talk. I hate the thought of him going through life not being able to communicate verbally. Senco are pushing Makaton and PECS but I don't want him to do those unless we know that speech is never going to happen. I just want him to talk and eat. I'm writing this in tears and feel like I'm having a breakdown. It's all so hard and I am not coping.

Hi, I know exactly how your feeling, my son has asd and gdd at 18 months he spoke but lost all his words, he didn’t speak again until 3 1/2. Pecs and Makaton is fantastic for them and you, as they can at least communicate their needs once its learnt and does not discourage them from speaking, and the earlier its started the best in my opinion.

the lack of support is awful! We have just been left to it now. We did a course from speech therapy which made no improvement and now on the waiting list for proper speech therapy but that could be years. Occupational therapy is the same. Have you or nursery mentioned a EHCP? That will get him the support he needs in a educational setting.

With the eating, is there anything he likes to eat? Iv learnt to just let my son eat what he wants (within reason) because at least he's eating something, we also give my son pediasure shakes if he’s not eating enough, you can buy it from boots or online. My son is 4 btw so not much older than your son.

Thank you so much for your reply and being so kind.

Do you mind me asking how your Son is now? Is he talking?

The eating with my Son is strange, he eats lunch and breakfast really well (usually) but hasn't eaten an evening meal at home for months - but he will at a warm meal at nursery.

I don't know if it's typical toddler fussiness, or a food aversion. It's odd as I've read about ASD food aversions and they typically say the child will eat crunchy, hard things that always taste the same (crackers, crisps etc) but DS loves fruit and eats a lot of watermelon, mango, melon, apples and pears and he loves yoghurt, bagels with cream cheese, cheese, toast, cereal, crisps, chocolate, cake but I cannot get him to eat a hot meal at home!

I try so hard to give him a variety of healthy food by he just refuses to even try it. Last night I gave up and served Pizza and he ate 2 full slices!

Nursery pulled me aside this morning and said he isn't eating much there at all and they're worried and I said I was aware and had already spoken to HV who told me to get him weighed in clinic. I've weighed him at home and his weight is in the "normal" ranges for his age and height but I can see his ribs and his stomach is going in. It's just so stressful.

I just don't think I'm cut out to be a Mum. I'm so unhappy and emotional and everything feels like climbing a mountain. I'm starting to feel disconnected from DS now too which is awful.

Your welcome :) i was hoping to come across kind lol sometimes people take things the wrong way over text.

He does speak but very delayed, he speaks like a 18-24 month old but it has progressed slowly over the last year and he can at least tell us what he wants, he also has echolalia which is the repeating of sentences or things he has heard, which is hard because most of his speech is taken up with that and its not functional.

My son sounds exactly like yours when it comes to food! He loves fruit and that the main of his diet lol, Same with the hot meal! He can go days without a hot meal with the exception of toast. I would actually say pizza is good at least he ate something. Tbh we have given up with trying to get him to try foods, if its on our plate and he’s interested in it, he might touch it or smell it and maybe even lick it which is progress, but normally I just cook him what I know he will eat and bulk him up with the shakes i mentioned and vitamins once a day.

have Nursery given you any advice on the eating?plus have you gone to the gp about it? Or when you see the paediatrician they can refer you to a dietitian.

I honestly feel the same some days I sit here and think why did I do this, which then makes you feel so awful cos you love them but they are bloody hard work and no one prepares you that you might have a child with Autism. All I can say is you will have good days and many very bad days but you will get through this. We both have very young children that are hard work to begin with plus the added extra of SEN, your allowed to be sad and unhappy at times.

whats your son like out the house? Is there any fun activities you can do together?

I really get the disconnection too, my son does not show affection, I have never had a kiss or cuddle from him, he will sometimes let me cuddle him but not often. I breakdown sometimes and say to my partner I don’t feel like a mum I feel like a carer, but I have to tell myself that no matter how upset I get that won’t change him. You gotta focus on their good points and getting out and doing fun things that you both enjoy and having a good day does great for bonding.

Hi OP, sorry to hear you're having such a tough time. Can empathise a bit as have a 3yo DD who is (not yet diagnosed) autistic. Slightly different to your DC she was speaking (a bit) but had a regression around 20 months and now is I guess what you'd call "non-verbal" (although I struggle with that term since she makes a lot of sounds, repeats nursery rhymes, counts all the time - but I guess does not use language to communicate).

I felt the same about PECS but we are now trying - just to see if something goes in. I think it's important not to focus too much on language because there are so many communication steps up to that point (I saw a tree visual of this somewhere, maybe you've seen it?) and I think going straight to language without her commnicating in another way is never going to happen. At the moment the PECS don't seem to "stick" but trying to get into a regular habit not just of trying to get her to point at them to request but also "we are going upstairs for bathtime now (showing a stairs and a bath PEC)".

We are also doing a parents course on Hanen "More than Words" starting in a few weeks. I read the book last summer and it made a lot of sense for building interaction but hopefully the course will help us to put it in practice more.

Totally recognise your frustration. I feel like it's waiting list to waiting list, or for us we've had a few instances where therapists (at her SEN nursery) have moved on so a whole new cycle of a new person getting to know her for ages, no actual therapy, etc... And you have a voice in your head saying how important the "early years" are for good outcomes etc.. It's very tough.

Go easy on yourself - do you have a good support system - friends, DP etc?

My DS is now 6 but your story is very similar to him when he was a toddler.

We paid for private speech therapy for about 18 months as we felt very let down by NHS SALT, I appreciate this is not possible for everyone, but the private SALT introduced PECS and it was beneficial, so don't write it off. It doesn't mean your son won't speak, it helped my DS to improve his overall communication skills and communication is more than talking. I absolutely understand how you feel about the talking being the most important thing, I felt like that too.

I struggled hugely for a long time, I think I was depressed and I definitely was very anxious. I won't say you shouldn't feel like you do but I wish I had also tried to enjoy DS despite my concerns as now I think I missed out so much on just enjoying him at that age as I was just so consumed by it all and that makes me sad.

Start thinking about an EHCP for starting school, start the process the autumn before he starts school. We had one for DS and it got him specialistic provision which has been fabulous for him.

I’m so sorry, it’s so hard, really feel for you. My friend paid for speech therapy for her daughter as she never spoke for a long time. It really helped and she’s been great all through school and is in a top academic school now. If he’s not eating lots and you’re worried he’s losing weight, give him pizza and blend extra veggies into the sauce that he can’t see.
Look after yourself. Have an evening out so you come back to him with renewed energy to cope.
i am a big believer in playing with them on their level… i really think it helps bond, their speech and behaviour too. good luck to you x

We found an ABA consultant (a BCBA) to set up a home learning programme for our DS and at 3.5 he's doing really well. I know there are some really negative views and experiences out their of strict ABA, but our consultant set up a programme based on something called the Early Start Denver Model (which isn't strictly ABA, but a play based approach that helps young kids develop communication and play skills). A year in, my DS is now chatting up a storm (though still with some echolalia), and starting to catch up on milestones he was falling behind on.

I mention this because the consultant has actually been really useful beyond setting up the learning programme - she's worked in this field for well over a decade, knows the lack of support out there, and has filled in the gaps we've had for the last year in waiting for paed appts, SLT appts, etc etc. We've had next to nothing in terms of statutory support since I first raised concerns at 2yo (one virtual SLT appt where my DS wasn't even required to attend, and a few sh*tty photocopies from books I'd already bought and read myself from Early Help). The consultant though, has given us loads of great strategies for not just boosting communication skills, but also life skills like brushing teeth, going on outings, etc. She's also provided the best advice I've had so far on getting anywhere in the utterly broken SEND system in terms of referrals and paperwork.

If you're struggling with the lack of support (and I totally hear you), a good BCBA consultant can cost only a few hundred pounds a month and provide better advice and support than a lot of NHS/LA-run services in my experience. I know not everyone can afford that, but if you can I'd really recommend it. Ours has been an absolute lifeline in the total absence of any other support.

Hi, I work in this field and have children with SEND.
in my experience, Makaton and PECS tend to bring verbal speech on, not delay it, as they support the cognitive processes behind all communication.
Its so tough in the 'waiting to find out' phase x

Hi x
i hear your frustration with the system . Hope your DS doing better now ? X