Autistic/hyperlexic four year old

[Haworthia]

This time last year I applied to defer my (May born) son’s Reception start. At the time he was three and a half, quite severely speech delayed, and delayed in most other areas too. Thankfully, it was agreed that he could start Reception in 2020 instead of 2019.

Fast forward to around March this year. He’d not long been put on the waiting list for an ADOS assessment (we are still waiting, although there’s no doubt in my mind that he is autistic) when he started to read words when we were out and about. Walking through the supermarket he’d point at signage saying “meat”, “fish” etc. At first I wasn’t sure he was really reading, but it soon because apparent that he was. Now, six months later (he’s just coming up to four and a half) he can read all manner of things, although sometimes it’s obvious he’s just guessing at the word. He seems to read the whole word too (goodness knows how he’ll get on with phonics), and will sometimes get his vowel sounds wrong, like reading out “post” to rhyme with “cost”. I’m not sure whether his comprehension is always good, because like a lot of autistic young children he can struggle with who/how/why type questions.

Number wise, he can recognise numbers up to and beyond three digits. None of this has been encouraged or hothoused at home, he’s completely self taught.

Now I have this gut churning feeling that he’s going to hate school and be bored. It’s not that I’m regretting the deferral, because he is still quite ill-equipped in so many ways: socially, emotionally, behaviourally, not long toilet trained, can’t dress himself etc. He still struggles with language both in terms of interpreting questions asked of him and making himself understood (even now, I struggle to understand what he says so teachers would struggle more). Academically though, he’s on another level, and obviously will be even more so come next September. In other words, spiky profile/twice exceptional (which are terms I have only just come across and describe him to a T).

He’s already bored at preschool and I’m losing sleep at night worrying how he’ll manage at school. If I had to choose again whether to send him to school this year or next year I would still choose to defer, but looking longer term and from a purely intellectual level, I just don’t want him to be bored and under stimulated.

Does anyone have experience of this, and of liaising with schools? Next year the school SENCO will start to attend his One Plan meetings, so I’ll need to discuss his hyperlexia as being one of his special needs. I’m also wondering whether to reduce his preschool hours, as much as it would pain me to lessen my own child-free luxury time

They work alongside speech therapists? That’s interesting. Although speech therapy provision here is also dire and getting in touch with the speech therapist here is so difficult I just can’t be arsed anymore. And her feedback is always “he’s making progress, watch and wait... see you in a year”

I am going to speak to the local specialist HV soon, though, so I will mention social and communication specialists to her and see what she says. Thanks for at least flagging that these professionals exist, because I had no idea.

Please read about the EHCP process on www.ipsea.org and www.sossen.org before applying. The threshold for assessment for EHCP is incredibly low. The legal test is that the Local Authority must consider
1 whether the child or young person has or may have special educational needs (“SEN”); and
2 whether they may need special educational provision to be made through an EHC plan.
If the answer to both of these questions is yes, they must carry out an EHC needs assessment.
From OP your son meets that criteria in that he is under assessment for ASD and his profile of abilities are spiky.
Don't be afraid to appeal all the way. Ds got his at 3 he could read the newspaper and do three figure sums in his head. Dd got hers at 3 as well in spite of being very able academically as well and having an IQ in the superior range.

Sorry quick questions. Has your DS been diagnosed to be on the autistic spectrum? Has he been diagnosed with a speech delay or disorder? With ADHD? Or anything else (Dyspraxia/verbal dyspraxia)? Has he receives speech therapy?

Thanks @hiredandsqueak that’s so useful. Interesting that you say the bar is low because all I seem to hear is how hard it is to get one. I’ll definitely have to do my homework.

@QueenBlueberries

No ASD diagnosis yet. Been on the waiting list since Feb.

He has a speech delay, but there has never been a formal diagnosis by anyone

SALT provision is dire here. He’s seen a speech therapist three times in the last two years

Does he receive speech therapy? No. I cannot overemphasise how poor the speech therapy provision is here.

Any other diagnosis? No. It all rides on his ADOS assessment which I’m guessing will happen next year

My dd is autistic and learned to read almost overnight it seemed, she started school straight into year 1 because we had been overseas. She was non verbal until nearly 4 but must have been learning to read because she was reading chapter books as soon as she could speak. They seriously surprise you.

You could enquire if you could start him after Christmas into reception or consider a combination of preschool and home school this year and straight into year 1 which worked fine for us (it helped that there was another high functioning asd kid in the class and she could simply share the teaching assistant, small school)

@Haworthia Local Authorities try it on tbh and schools are fed information through Local Authorities which means that they aren't the best sources of information on EHCPs. There is a lot of fudging and trying to deny that there are laws underpinning the process that have to be met.
Your best chance of success is gaining the knowledge of the process first and letting IPSEA or SOSSEN support you in firstly, putting in a request for a EHC needs assessment (which will bring out the Ed Psych) and then appealing if needs be or securing an EHCP that is worth the paper it's written on.

Should add with a good EHCP you can have SALT and OT input weekly written in the EHCP like it is written in my daughters.

He has a speech delay but there has never been a formal diagnosis

So when you went to the speech therapist (I'm assuming on the NHS) they didn't write a report ? They may not offer any therapy, but they do a report & target sheet / care sheet after assessment.

Did they discharge you each time you visited? Then you don't get a care plan, but there still would be written documents. This why as useless as the NHS SALT can be it is important to keep attending for the reviews and keep on at them. The care plans are usually stuff to do at home with them. They do tend to favour the wait and wait some more approach of doing nothing.

I'm impressed that you got permission for CSA in reception, usually despite it being allowed for summer borns they want evidence an actual reason of why.

I have the SALT reports, yes. Not discharged after each visit, but nor was I ever offered a follow up appointment. The onus was on me to contact her to make an appointment at some unspecified future date, when I felt like one was needed. Except she’s virtually uncontactable, despite having her email and phone number

She saw him at preschool about six weeks ago. The report from that visit (sent to preschool, not me ) said “will contact mother to arrange an appointment at clinic”. Has she contacted me? Nope. So I’ll be starting the arduous process of getting an appointment with her soon.

I'm impressed that you got permission for CSA in reception, usually despite it being allowed for summer borns they want evidence an actual reason of why

Lots of schools now give permission for CSA start in Reception with no SEN, actually.

However, in our case there was evidence provided by preschool. I don’t know if you’re familiar, but the standard EYFS paperwork that plots their developmental age across numerous categories “emerging” in X, “secure” in Y etc.

I think that it will come pretty much automatically that y our DS will have an EHCP but it will be focused mostly on his needs for extra support in speech development probably and social skills. In my experience EHCP are not specifically made for pupils who are excelling in any subject. Many children can read at 4 years old, there were at least 3 in a class of 30 when DS started Reception. DS was (and still is) G&T in maths and his understanding of maths concepts and his ability to do mental maths was amazing but his EHCP was focused on what he was 'behind' in (language, social skills) not what he was actually excelling at. I hope that makes sense.

OP, my son was similar. He could read fluently at 4 but was more like a 2 year old, in terms of speech and emotional behaviour.

You will, without doubt wait forever between SLT(18months we waited) peads (1yr) and you need to keep proactive on that front. But there is partly a developmental reason for that... By the time he had his diagnosis he had gone from completely. Non verbal to more or less normal chat with us, echolalia and other symptoms notwithstanding.

You need to make sure you monitor what he's reading... the biggest issue I have is keeping him away from more grown up books that he is capable of reading...but not ready for emotionally..he read his own paediatric update a few month ago, so that was fun . I was hyperlexic too (although not especially clever) read Flowers in the Attic when I was 7 and was completely traumatised after, so I can't recommend enough that you stay vigilant when he gets a bit older.

The teachers give my son extension, they discreetly slip it into his bag. They have him in a separate maths group with a couple of others but nobody wants him to be the odd one out more than he is, so for the main part he's kind of treading water.

We do maths at his true level at home. We talk about maths a lot... Otherwise, he's just bored and angry. But there's only so much a school can do. You end up plugging the gaps, but the hardest one to deal with IME is friendships and my son is only just getting the hang of it now. Eg has only just learned to share, take turns etc.

What has helped him has being put on the table with the most extravert bit well behaved and predictable kids... He has really come out of himself alot, teacher did well there.

My lo is almost 7, diagnosed as autistic at 3 years. She has a significant delay in functional language, severe sensory processing disorder, self injurious behaviour, severe anxiety and a host of medical issues to boot.

She also has a reading and comprehension age of 12 years and her last numeracy screening scored her at 9+years (the test is for the infant dept so doesn’t go higher), her teacher felt that she would easily have scored higher as her numeracy is stronger than her literacy. She currently works at a 12 year old level for maths at home, managing most problems mentally, she has to be encouraged to write down her process for her answer.

The teachers had literally no idea as to the extent of my lo’s academic competency because they don’t understand my lo’s speech very well (when she does speak), she is delayed in her motor skills, in nappies and is very small for her age and so tends to be baby’ed. The results came as a shock to say the least.

At school she gets no additional work to meet her academic needs because the almost entire focus is on her social communicative development. She can barely do the very simple work she’s given in class because she has to work so incredibly hard on just managing the environment.

We do the majority of her academic work at home after school and at weekends. She thoroughly enjoys this and we can really tailor the work to her needs, eg she has poor fine motor skills, so she does handwriting work books at preschool level but she has just completed a modern studies project (via essay and PowerPoint) on the colonisation of India by typing on the laptop.

In short, I think you need to be prepared for the potential of your child to not perform to their academic optimum within the school environment and instead view it as social and communication opportunities to learn and focus on academics at home.

Doesn't have to be academic work, it can be learning a musical instrument, chess club, cubs/scout, strategic board games, complex Lego building, coding (as in computer programming such as Scratch), etc

It’s good you have picked this up - be prepared to be your child’s advocate a lot! In particular:

• teachers will assume your child can understand what he reads. push for reading comprehension help at a level way lower that his reading capabilities so for example simple questions about a book, acting out stories etc
• get a rough sense now of his speech - is receptive language poor? A speech assessment would be good even private. If so get teachers to give him simple instructions and simplify their language, to slow down and be mindful he cannot understand always and to help him.
• teachers also assume if he can read he is bright in all areas and may expect too much and go over his head.
• he may get very bored with phonics - he probably needs more help with other areas.
• you need to get on top of any behaviours and translate them for the school - he might well need movement breaks
• look up theory of mind and get him help with this, he may have a poor theory of mind and emotion cards, thinking bubble work and drama will al, help.

Also, your kids love of letters and numbers could be a source of joy for them, do let them revel in what he loves and support it. It’s an amazing skill to have.

We do the majority of her academic work at home after school and at weekends. same!

@Haworthia that's good you have the SALT reports. So you will have a diagnosis section on the report. What have they said about his speech? Is that he can read things, but doesn't put them together himself? I feel your pain on SALT, I'm sure it's the only NHS service that makes you do all the chasing as the patient, instead of just issuing regular follow up appointments.

My DS is speech delayed, doesn't see the point of sentences, when he can use single words or gestures to get what he needs. He will (if I insist repeat) what I say. I will apply to delay his school start in reception too hopefully get it ( he's nearly 3.5 now.) He is coming on socially slowly, but I think lack of speech really affects those relationships. Little children aren't patient if they don't understand.

She can barely do the very simple work she’s given in class because she has to work so incredibly hard on just managing the environment

@PinkyU This is the sort of thing I worry about. He struggles with busy, noisy, chaotic environments and I can see how this prevents a lot of autistic children from reaching their potential.

@Clearnightsky There’s no way his comprehension matches his ability to read the words. Thanks for mentioning speech assessments - this is something I’ll look into privately, I think. Although I obviously know his strengths and weaknesses better than anyone, I lack the SALT lingo to describe his issues. And he definitely struggles to understand quite simple commands at the best of times.

@getgoingnowshowing I’m pretty sure there is no diagnosis in his SALT reports. They are SO basic. I remember one mentioning “frequent echolalia” but he doesn’t do that anymore. Other than that, the reports says “He does this, he does that”.

The SALT definitely isn’t even aware that he can read. I’m not sure preschool mentioned it when she visited. Equally, I haven’t seen the woman in a year and he wasn’t reading then. I really must try to reach out to some private therapists again. I’m just so sick of contacting people and getting ignored.

If your child can read there is a danger they are left a bit as the teachers can ‘relax’ about their education and are then surprised when they get to early primary and have not caught up in comprehension.

They also might tell your child off for something they had no idea about as they didn’t understand the instruction or the telling off!

I was possibly hyperlexic (started reading words at 18 months, fluent reader by 2) but am distinctly average now other than being able to absorb written language quickly.

It meant I skipped my reception year as they didn't know what to do with me at my school - it did me no favours socially and I was very unhappy for that year.

While I'm not on the spectrum, ds likely is. He read at a more usual age though.

This is obviously a wider discussion than just decoding, but our experience is that being ahead in that did not lead to be being bored. Get your son excited about school and all the stuff he can learn there and he should have lots to occupy him. Learning to write, comprehend longer sentences and words, maths, science, history, getting books out of the library, ICT, PDL, breaktime, PE, assemblies. He'll have plenty to keep him busy.

Our son's autism only really started to bite when he was in Y3 and his brightness could no longer paper over the cracks in his social understanding. Him nailing decoding early on and being at the top of the top reading group really was not a problem. He loved school all through infants.

Our son's autism only really started to bite when he was in Y3 and his brightness could no longer paper over the cracks in his social understanding. that is important, all these early years the school can help with social, comprehension and speech deficits, but unfortunately many are focused on teaching phonics and reading instead. Which your child won’t need.

Clearnightsky, I am not sure about that. Sorry but the curriculum is very much still based on learning through play, which encourages better social interactions and skills (waiting for your turn, respecting how other children play, play with children of different abilities), independence, creativity, etc. In reception, the learning of phonics is only one part of the curriculum and although it’s done every day, it isn’t what the pupils do a majority of the time... there is plenty of time for free play, learning through play, developing social skills and fine/gross motor skills, creative play, etc.

@QueenBlueberries I guess it depends on the school and I agree with much of what you have said. There are still unique challenges that a child with autism may face for example lots of complex instructions, role play and sophisticated social games that are too high a level. Also comprehension for kids who are lagging with receptive language needs to start as soon as possible, the younger the better.

In my experience there was a huge amount of phonics, early reading, basic maths and handwriting - these are what are taught first and children with more ‘unusual’ abilities, either very high or very low then tend to throw an inexperienced teacher or be missed entirely. Better to be prepared!

But point taken.

Just come across this post. Your son sounds very very similar to my son who is 4 years and 2 months and starts reception this September. He is not yet diagnosed either but I have little doubt he is autistic. I will be pushing preschool to apply for an EHCP as I think he will need extra support to cope with all his other, mainly social / sensory difficulties, and I hope that this will also allow him to shine as he has a very spikey profile and I don’t think the full extent of his capabilities are always picked up or given that much attention (I’m not sayings my son is ‘gifted’ but he is certainly bright and very advanced in maths and some areas of literacy- although his comprehension of the stories he reads is nowhere near on par to his ability to read the text) The preschool have been a bit reluctant to get the ball rolling for an EHCP as they also said they were unsure if he met the criteria, but myself and my husband have decided to go ahead and apply ourselves if they don’t agree to get an application together soon.

Hi OP, how is your son getting on? I thought I’d add to the thread as what you’ve said reminds me of my son at that age. He’s 14 now and has attended a special school since Year 6.
He was born extremely prematurely so we always knew that there would be challenges for him as he got older. He has ASD and a lot of undesirable extras. He didn’t speak until he was 3 and a half, and in hindsight we realised that he could read long before he could talk (entirely self taught). By 4 he was reading full sentences about absolutely anything, happily reading the back of the cornflakes packet to anyone who’d listen (anyone interested in riboflavin?!). However his ability to read was completely useless at school due to his lack of comprehension skills. I had never heard of hyperlexia until we had an ed psych assessment when he was about 9, and she identified it. Frankly it’s the most useless ‘talent’ I’ve ever come across, and as I’m sure you are aware, is completely different to being amazing at reading and also understanding what you’re reading, in a G&T sort of way! 🤯
I do encourage you to try to get your son an EHCP. My boy has had one since just before he started mainstream Reception, and it helped enormously until he moved to a specialist ASD school.