Supporting a Hyperlexic toddler with DLD

[Munchkinst]

I'm sorry if this is the wrong thread but I need help.

My son is 3 years 10 months old. We recently started speech therapy (after waiting over a year). He has some spontaneous language skills and a wide vocabulary. He has started tying words together and beginning to use language in conversations but still uses jargon/gibberish as well. But he has begun communicating with me verbally and has excellent non verbal communication skills.

My son is also hyperlexic. He learnt to count and his alphabet and numbers early at a year old like most children. But he also taught himself to read. He has not memorised words and books as he sounds words out and sometimes gets the pronunciation wrong if he has not heard the word before just read it. He can read books cover to cover and if you write words down to test him. He is reading at a 9-10 year old level. I have not taught him, ignored earlier signs of this and brushed it off as memorising words or books and coincidences until I realised he was breaking down larger words.

He has read book after book at nursery where they also reported the same thing and done it for the speech therapist as well so this is something observed in clinic as well as home and nursery independently.

The speech therapist suspects he has autism and he has been referred for an assessment.

He is incredibly bright, but despite reading struggles with comprehension and communicating his needs and speaking in full sentences. We have stopped potty training because he will not communicate he needs the toilet at nursery and hold it in rather. At home he will just go to the toilet by himself because it is accessible and just ask for help wiping, but not say he needs the toilet, for example.

Does anybody have any experience with a hyperlexic child and what professionals I need to approach for help. The NHS is overwhelmed and it is taking ages to get anything moving. I want to know what help I need to get, who to get it from (private is fine) and if there is a way to use his hyperlexia to address some of his speech deficiencies. He is due in reception next year and I am increasingly concerned, he will be left behind or fall through the cracks because he has complex needs.

Hyperlexia is almost always co-morbid with autism, so I would really push for a referral for assessment.

If he can take on meaning from what he reads it will be helpful in that you will be able to use written schedules and social stories with him earlier.

He definitely understands some of what he is reading and acts it out or uses spontaneous speech relating to what he is reading so makes a comment on a book he has read about something related. So I know he definitely understands. It's getting a grip of how much he understands.

We have a pec board with activities and he understands when it's time for breakfast, a snack, swimming etc., by using the board. So I think there is definitely scope to use written schedules and social stories.

I would put written labels on items you want him to know the name of at home. I would also play matching games where you give him the written word and he has to find the object it goes with, I would model reading the word out loud so that he is also more likely to read the word out load practicing his pronunciation.

For working on Acton words, I would have a series of cards with short phrases on them, e.g. kick the ball, bounce the ball, roll the ball. He has to pick up a card, read it out loud and carry out the action. You can make it harder by introducing more actions, or different objects e.g. cuddle teddy, feed teddy, cuddle dolly, feed dolly.

Your child's hyperlexia can be a real strength in helping him see how language is built.

He sounds similar to my son at that age although my son prob less extreme. Rather than do a traditional social story with pics you could just write things down, like a step by step set of instructions. I don’t think hyperlexia is diagnosed in this country especially not on nhs. My son has asd diagnosis which he got age 6 after lots of issues at school with him having meltdowns. We also had issues with reading at school, in that they kept him on easy books as they said although he could read he had no comprehension of what he was reading. We got a good teacher in year three who realised he did have good comprehension he just didn’t like being asked and answering questions verbally about what he’d read so said he didn’t know. Mine is now in a specialist asd school for kids of mainstream academic ability. In my experience mainstream schools can’t deal with kids that are too far outside “the norm”

A Speech and Language Therapist would be the ideal person to help, but in the NHS most of them are too swamped to tailor make a bespoke programme for your child (although I expect the majority would love too).

Yes we have a lovely NHS therapist. She is calling me on Tuesday for further discussion and starting the referral process, but we had our 4 sessions focusing on video child led sessions which worked well and has him communicating more. It's just the system only allows us 4 sessions and 1 review session.

I don't understand how we can be discharged from clinic when we don't have a plan because our 5 sessions are up. My only concerns are that she says the DLD support is not supported once he is undergoing the autism assessment. I would like both as I think he could require both sets of help. The private sector is not encouraging either.

I don't know if I am allowed to ask her if she does private sessions to help come up with a more tailored program to his needs ( it seems to be a one size fits all, tickbox exercise, computer says no, no room for nuance etc). Is that a faux pas?

I'm glad there are specialist schools for children with mainstream ability as maybe that would be best for him.

I am noting these games and suggestions and will formulate a plan. I have taken some time of work to help me figure all of this out and what it means

So sorry if my thoughts are jumbled and my writing is not clear.

My first thought reading your post before you even mentioned autism was your son is very likely autistic. He has a a lot of the key indicators . My eldest is autistic and has adhd early intervention is the key to the best long term outcomes and getting the right support. I am sorry but you have to become a pushy mum for this to happen. Make the phone calls raise your concerns over and over and be heard, don’t take no for an answer and insist he is referred for assessment. Some areas have 3 year waiting lists for assessments. Is he in pre school nursery yet? My son is 10 and does really well generally in mainstream school with support and has a nice little group of friends, participates in a small number of activities etc. Early intervention and right support was key to this.

AndnextcomesL on instagram and elsewhere has a lot of good resources on hyperlexia.

Thank you for the resources. I have just looked up and nextcomesL.

Yes I have been told it's a 2 year waiting list. I will have to make calls and become extremely pushing. I asked for help instantly when he was a year and a bit old for his speech and was turned away constantly because it was too early. Even when he was two. We were supposed to be on a 4 month waiting list for therapy after he was finally assessed and it took a year and I think we only got an appointment now because I kept calling monthly to check when it would start.

I think I just need to gather myself and prepare for a long journey of advocating for him. I let him down by not getting the help sooner but I will be on top of everything from now on. Does anything in the process require both parents (with parental rights') consent. My ex is very much against any of this and would have a fit if he knew our son was being referred for an assessment let alone in speech therapy. I don't need him involved or blocking the process, or being antagonistic towards us.

I know very much he will blame my parenting, my leaving him, me being a single mother etc., for this. It makes no sense and I know nothing "causes" autism or learning disabilities but he is definitely one of those "alternative" facts radicalised incels at the moment and trying to reason or coparent with someone like that is near impossible. Will I be able to keep him on a need to know basis?

Oh yes. He is in nursery at the moment. He starts reception next September.

I have selected a school with some DLD resources for him. I am hoping the speech therapist still writes the supporting letter even if she thinks he is learning more towards ASD than DLD.

Udemy has online courses for parents of children with Autism for about £15-25. You could take a look at the reviews of the different courses (and they also have some videos free as a preview) to see if one of them appeals to you to learn more?

Thank you will do this as well

You could get advice from Ralli and Afasic. Both language charities.
A much speech therapy as you can afford would be my suggestion. It makes such a huge difference over time.

He sounds similar to my 3y5m daughter, although her functional speech is not as good she uses echolalia in context. She was diagnosed with autism in August.
we see SaLT once a month in the community and she has twice monthly sessions in nursery which will continue until she starts reception (she just started this September so only at the beginning)

have you spoken to his nursery or schools ALNco about an educational psychologist observing him? I think that would be the first point of call in getting something written officially in terms of how you want to proceed educationally.

My hyperlexic daughter with speech delays did have autism. At 18 months she was assessed as having excellent receptive language skills, but very few words. At 2 years she started speaking in fully formed paragraphs. We joked about it at the time, but it seemed like she just didn’t want to speak until she could speak like an adult.

she also had toileting resistance. She once held things for 24 hours because we changed the type of diaper. She didn’t go until we found one of our traditional brand.

Those age markers don’t really help your situation though. Every child is different and girls and boys tend to present very differently I’m really posting to let you know that you aren’t alone.

If I were in your situation I would probably use story cards. Visual cards you can post up around the house or in a central location that let him tell you what he needs. For my daughter we used them to help her with multi-step routines. They are really easy to make. A simple picture and a word. if it is a checklist then have some way for the child to indicate the task is done, thus can be turning the card over, flipping it on a chart, moving a magnet, etc.

As your DS is only three he has plenty of development time and you already know he needs support, so you're both doing very well! You're right that this is a marathon, not a sprint. So don't feel you have to get everything in place at once. Assessments are definitely worth getting. Speech and language therapy is likely to be big help, and social skills therapy as he grows up.

Can the nursery help him with toileting by having a regular routine visiting the toilet every couple of hours so he doesn't need to ask?

I wouldn't worry about the hyperlexia as such. My DS (ASC diagnosis) was a very early reader but even so we found that picture calendars and picture lists worked better than written words. You might want to look into PECS.

When DS started school for a couple of years his reading ability was way ahead of his ability to understand what he was reading. We dialled down the reading at home and watched more kids TV instead (CBeebies/CBBC) and videos on repeat, which taught him some of the social stuff he needed.

One oddity about my DS was that he was highly verbal until he wanted something and then he totally lost his words. When he was about five I spent a long time going through lists of things he might want until he finally nodded frantically. But then I remember sitting in front of the telly and him coming out with a perfect "please pause the video mummy I want to go for a wee". I think he was just feeling relaxed!

Your DS will not fall through the cracks with you looking out for him

If you want to get more NHS speech therapy sessions then you will need to apply for an EHCP . My DS has verbal dyspraxia. When he was first diagnosed the NHS therapist was only allowed to give him 6 sessions per year (once every half term). Once he had a plan in place he received a session from her every other week and from a S&L assistant in the weeks between. Within 4/5 months he made a huge improvement and then was discharged. He’s 14 and after a big battle we have managed to secure some more NHS S&L time. My DS didn’t start speaking until he was 3 and then he was only using single words, a year later he suddenly started speaking in sentences- it was as if his brain has processed all the information and was ready to start using it.

If you can’t wait two years for an NHS ASD assessment then you will need a private assessment. Unfortunately most of the children/parents on that list are in a desperate situation so it’s almost impossible to be moved up no matter how pushy you are. Your ASD support will come from education anyway so you need to look at your DSs strengths and weaknesses and push the school to support those.

Thank you so much. I am learning a lot and noting this all down. I will advocate for him as best as I can and look into getting him a private autism assessment.

As for toileting. They take him every hour at nursery but he just refuses to go and holds it in all day until we are on our way home and then soils himself. I asked them to just put him in a nappy if he spends the morning without going or asking because he holds it in and I guess it is a lot to take on so they have effectively stopped and just resorted to keeping him in a happy. Was I wrong? I felt uncomfortable with him refusing to toilet for 9 - 10 hours a day couldn't be healthy.

eric.org.uk/potty-training/

This is where the paediatrician will direct you to before you can get help from the incontinence service.

my older son is 5, he also has complex non-verbal autism and isn’t toilet trained. They keep increasing the age at when they’ll give professional help - it’s 7 now

Have you come across the idea of gestalt language processing? It's a way some children develop language, and it's closely associated with autism (not always though) You could look at Meaningful Speech (Alexandria Zachos) on instagram to see if this sounds like your boy. Traditional speech therapy doesn't work well for these children, but more speech therapists are learning about gestalt and providing the right therapy.

Oh, also if you decide to try independent speech and language therapy www.asltip.com is a good place to find someone.

Was I wrong? I felt uncomfortable with him refusing to toilet for 9 - 10 hours a day couldn't be healthy.

Nah, not wrong at all. You can't fix everything all at once and in the meantime you do what works!