Or is my hyperlexic 3 year old actually neither ….

[ForWorthyTiger]

Autistic OR ADHD?

First of all, I know we can’t armchair diagnose, but I’m wracking my brains right now with my puzzle of a 3 year old little boy.

Theres my gut mum feeling that he’s without a doubt hyperlexic, hence excellent decoding skills but communication difficulties and poor comprehension. That all makes perfect sense. He fits the description for hyperlexia on almost every single front apart from the fact that he is more a sensory seeker than avoider. He also follows the trajectory; regression at around 18 months, early letter / number / shape recognition (could count, recite alphabet and recognise individual letters and shapes at 18 months - 2 years) then started being able to sight read at 2.5 (could well have been able to before this) and now is starting to develop language is a gestalt learning style. Not a lot of functional communication going on but some is starting to emerge now he is 3.5.

But here’s what always gets me, why is hyperlexia not in the DSM?? Especially given that dyslexia is! It’s a learning style to my knowledge that benefits from a specific range of interventions and supports, rather different to that of autism (without hyperlexia) or ADHD. It is often also shoehorned onto a broader diagnoses as I understand onto ASD when accompanied with communication differences or what they tend to call ‘speech delay’. But my worry is that if my son gets a diagnoses of ASD, of which doesn’t entirely fit him in my opinion, in school they will concentrate on that and not the hyperlexia.

If anything I feel like he skews more ADHD as he does not crave order, or sameness or routine, but enjoys novelty, movement and sensory input. And maybe what makes him ‘appear’ autistic is actually the fact that his communication difficulties very much make him behave autistic-like?

I have to admit I was never the type to think that a hyperlexic child like mine wasn’t also ergo autistic but the more he grows and develops the more I doubt it. I was the first one to raise concerns about autism or certainly the signs of atypical development in my son when he had his first developmental review at which I was promptly dismissed given that he was seemingly engaged doing all the typical things at the time, but something niggled at the back of my mind, and of course I am right in that he’s without a doubt neurodivergent, but all I can see in him is hyperlexia but not necessarily an actual diagnosable condition such as ASD or ADHD, or even AuDHD as they just don’t seem to ‘fit’.

Intervention / therapy wise nothing that is recommended for autism or ADHD has been super effective but approaches used for hyperlexia have.

Has anyone else experienced this at all??

Lots of ND children don’t fit into any particular box. Most educators know that. If you aren’t sure what you want, wait a bit and see how he matures and develops. Is it you or the pre-school who are pushing to go for the EHCP?

I’d like to reassure you that most school teachers & TAs will get to know your son as the unique individual he is and will offer him interventions that are appropriate for him - not to a label. Don’t borrow trouble by worrying before you get there - it could all be fully documented by then if you are on a diagnosis pathway.

At his first setting and with a few professionals who have seen and worked with him they have taken a rather blanket approach to him and ignored his individual needs so I suppose I’ve become overly cautious that the worst case scenario is that he’ll end up with someone who just doesn’t ’get him’. Especially if they think ‘autism’ so I must take this particular approach where we’ve tried and have proven not to work with my son at all. His pre-school teachers have got the ball rolling for EHCP because it takes so long (in my area anyway) if he doesn’t get granted one then he’ll definitely be under SEN. His current teachers all know him and I can breathe knowing they know his individual needs separate from any looming diagnosis.

I have known deferred children to spend an additional year in Nursery then go into Reception. I’ve never known a deferred child to go straight into Y1 as that would make little sense.

LAs have Early years inclusion funding that pre school settings are able to access which would enable providers to employ an additional adult to support children who are likely to require an EHCP.
www.gov.uk/government/publications/early-years-business-sustainability-guides-for-providers/extra-sources-of-income-for-early-years-providers

Autism spectrum disorder DSM-5 diagnostic criteria: Full text
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.

* * B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).
4. Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity: Severity is based on social communication impairments and restricted, repetitive patterns of behavior. C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities or may be masked by learned strategies in later life). D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning. E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

I just wanted to put this here for you @ForWorthyTiger If you consider your DS's sensory seeking behaviour (B4), interest in letters (B3), lack of ability to follow social routines (A3), lack of normal communication (A1), and the fact that pre-school are recommending an EHCP with 1:1 support (D), you'll see that he really does tick a lot of the boxes, from your description.

He's only 3

Honestly, I don’t see which part you are referring to that doesn’t fit in with ASD. I have an autistic daughter and at that age she had barely any noticeable traits. It was only as she got older it became more obvious as things were no longer age appropriate. My daughter is also a sensory seeker. All Autistic children are different, there is no rigid profile. My daughter doesn’t fit in with what a lot would consider to be Autistic but she most definitely is. The educational psychologist will note the hyperlexia in their tests and recommendations will be put in place which then inform your child’s education plan.

Why are you so focused on getting an EHCP? He’s only 3.5 so it’s too early to be able to tell what needs he might have at school. Plenty of SEND children manage fine in mainstream education and don’t need 1:1 support. My child’s school have put all sorts of things in place to help him adapt, it’s all done through the SENCO.

You could look into getting him an ASD assessment in the meantime then see how he goes in reception and take it from there.

OP, I am finding your thread really interesting.

I am a SEN specialist and am aware of hyperlexia but until today did not know it existed outside of autism. I am also a person who could read by age 2, but I don't think I have hyperlexia according to the definitions I can find. My visual memory is actually shockingly poor!

I do agree with others that the DSM5 autism diagnosis criteria do seem to fit your son. Obviously with the usual caveats of never having met him and not being a diagnostician, and therefore I'm not saying your son must be autistic; rather, it's a sensible thing to consider if you want him to be diagnosed.

The autism "umbrella" is incredibly wide, and it is the only diagnosis that would explain your son's communication challenges. In our nursery, we have at least 5 children who are probably autistic out of 30. Their needs are all very different - 2 are non-verbal, one sounds like your son, one is a sing-song GLP, and one might be seen as "naughty" but seems to have huge sensory and communication needs. The strategies that work for them are also diverse. A good school will sit down with you and talk about what you find helpful for your child, and try to implement similar strategies or develop their own that work for him.

Wrt the stick/ Y thing - I'd consider that a form of order seeking or ordering. He is translating random and randomly shaped objects into the order offered by the 26 alphabet letters.

I'd focus on his speech delay if I were you. Have you ever been offered speech therapy?

What do you mean by "social routines"?
What self care skills can he not accomplish and is he defiant about doing these (throws a tantrum, insists on mummy doing things for him) or just helpless/ doesn't seem to understand how to (for eg. pull up his own trousers)?

I learnt to read extremely young, and struggled with verbal communication. I think (or the adults thought) it was because I learned to read words on the page before I had learnt to talk properly (because I was reading well before 3). So I would pronounce words the way I thought they should be pronounced based on how they were written if that makes sense. And actually prioritised the way i read words over how I heard them. I was also quite stubborn. I had speech therapy and that basically sorted it out eventually. I would say now, I am a fast reader but I make spelling mistakes/grammatical errors the way a lot of people do. So I didn't grow to be a savant of the written word. I also didn't grow to have issues with verbal communication (and don't have autism).

Your son sounds slightly different because alongside his precocious reading he seems to have other quirks as well - seeing a stick as a letter shape rather than a stick is maybe more than just having issues communicating directly because of hyperlexia. I guess that it would fit the "restricted or repetitive interests" symptom of autism. Just rather than fixating on dinosaurs or types of cars he is fixated on letters to the extent his whole play is centred around the alphabet. The other issues he has "that he cannot follow social routines within the day nor can he fully do age appropriate self care skills. He also cannot express many of his basic needs. Not toilet trained but has some awareness!" don't, as you say relate directly to hyperlexia. They seem like separate issues to that.

So I would keep an open mind for the time being and not write of autism/ADHD. Because hyperlexia doesn't explain the issues you are struggling with/worried about. Of course it might be nothing diagnosable, and he might just be a very individual child. I think the problem is, while the techniques for hyperlexia might help more than those for autism I guess the techniques for hyperlexia won't be designed to help with toilet training/social routines etc. So I would remain open to the possibility it could be autism.

Same! But even though i can remember names (and other details) perfectly if written down, I am really bad at matching names to faces. I hadn't actually connected the hyperlexia in childhood to being good at pattern recognition (which I am good at and is a key part of my job) but it makes sense.

TBH apart from the hyperlexia he sounds like my daughter who I thought had ADHD but is actually autistic.

He won't be treated as "an autistic child" he will be more likely to get appropriate support with a diagnosis.

All the things that I assumed were just weird family quirks; autism. I'm probably autistic too 🤷🏼‍♀️

Autism is more of a buffet than a set menu.

I feel like a bit of an idiot for sticking to "she's not autistic" for so long tbh.

Hyperlexia isn't a disorder, why would it be in the DSM. It's a fancy way of saying advanced skills with reading. There is no need to try and turn it in to a disorder, diagnose children and get them extra help. There are children with very significant delays with their development in desperate need of support that isn't available. There are children with serious mental health issues with their lives at risk waiting years for assessment and support. They need to be the focus. Let's not add more strain on services by trying to turn a strength in to a disorder.

Hi, I have read OP posts but not the full thread.
I am a longstanding autism specialist.

You are right to think that nobody should be thinking 'i have this autistic child coming into my class so they will be anxious and need pre warning of changes and I will do a visual timetable and write some "social stories" (badly) and that will sort it out'.

However I don't understand outside if that sort of thinking shortcut what it is that you mean by "autism approaches" that don't work. Any intervention should be identified in an outcome (something we would like to be different following a period of intervention) and should be based on an assessment of his needs, whatever they are. Assessment is used there in its widest sense - could be observation, consultation, discussion, testing, all sorts of ways to assess.

I don't really understand why you feel hyperlexia and sensory seeking with gestalt language processing and delayed/atypical interaction and communication is not consistent with autism. The hyperlexia is a symptom - of advanced pattern recognition skills and good visual /auditory rote memory skills - also evidenced in GLP language acquisition. It's very consistent with autism given that he isn't a generally highly able child reading early with comprehension.

The main danger in this sort of presentation is that it can be hard for school staff to get a grasp of his language comprehension and may overestimate his comprehension of speech and vocabulary, especially if technical words are included in some of his gestalts.

It sounds like his primary intervention focus should probably be on shared attention as this is the foundation of classroom/ group based learning - the ability to pay attention to an activity one has not chosen, at a time one has not chosen.

I understand your concerns for your DS and desire for him to have an education that meets him where he is. But I'm not sure your child is as puzzling as you think he is! "Spikey profile" - strong skills in some areas, deficits/differences in others - is a pretty well recognised thing in autistic people.

From what you've written here, he very much sounds autistic. If he didn't point until over 2, speaks in gestalts, has expressive language ahead of receptive, enjoyed reciting the alphabet at 18 months (repetitive behaviour), seeks out sensory input - you're ticking a lot of boxes. No one with ASD displays every trait. That's what a spectrum disorder means - that individuals with it display traits from a spectrum, not that there's a line from NT to ND that everyone sits on. Not having meltdowns probably means that you and nursery can accommodate his needs, which is great, or that he responds differently to stressful situations (shutting down, for example). Low attention can result from sensory differences, and differences in social motivation associated with autism.

It is actually not uncommon for children to have decoding skills beyond comprehension, especially if they've learnt to read through some form of synthetic phonics (or, in your son's case, they naturally like systems). Good teachers will be checking for reading comprehension - even my reception DS's phonics books have comprehension questions attached.

A good EHCP will be written for an individual child's needs, not with blanket approaches for their diagnosis. A good classroom teacher will engage with parents about how best to help their child, and will understand that all autistic children, are individuals. My DS has never been treated as "the little autistic boy." The best thing you can do is educate yourself on the EHCP process and law (for example, the fact that there are children with higher needs than your son doesn't bar him from specialist school) rather than being concerned about the precise diagnosis.

Is not talking properly at 3.5 part of hyperlexia then? Genuine question. I would have thought that was a speech delay.

Interesting post. I'm a mum of a recently diagnosed hyperlexic with gestalt learning 2.5 year old boy. He barely spoke until age 2, and when he did his second word was to point at a number and correctly name it. He then knew everything in batches. All the letters, all the numbers, all the animals, all the shapes. He is reading sight words already, and his 5 year old sister can't. It was textbook gestalt but we didn't know what it was at the time. He has had a huge amount of speech growth in the last 3 months, it is so amazing to finally have him learn to communicate. From age 1-2 we thought he was just developing his physical side more than speech, as he ran and jumped and climbed everywhere. It was ADHD/ADD hyperactive in nature and largely uncontrollable. He still struggles with staying seated for meals etc.

What he can't do easily right now though is integrate into his nursery group normally. He walks up to children and doesn't know how to start a conversation or initiate play. He wants to, and tries to, but he just can't get it right and gives up. His diagnosing therapist noted that we need to pull him away from the books and heavily focus him in nursery relationships, play dates, help teach him how to integrate and have "normal" play based relationships with other children, or he will really struggle as he gets older. To yout point though: the therapist also said that he isn't autistic. He doesn't shy away from eye contact, hugs etc. He actively seeks them out. She did say he likely will have some form of spectrum attributes as he is simply wired differently. I don't think this is autism though in his case, and do wonder if hyperlexia (type 3 - i'm aware there are others that do have more ASD influences) is somehow the opposite of dyslexia and both just have differently wired brains. I guess in the realm of toddlers, who knows?

It isn’t part of hyperlexia. It can go alongside hyperlexia, but it isn’t part of it. Most hyperlexic kids don’t have any speech problems.

@ForWorthyTiger

My DS11 is hyperlexic (according to the educational psychologist) and has learnt to talk gestalt style. He is also an excellent reader but struggled with comprehension. He has ASD and is also a sensory seeker. He didn't talk from ages 2-4 after typical speech development til he was 2.

He has an ehcp and just moved to a special school from mainstream.

Neurodivergence is treated as a deficiency, accommodations are made to allow the ND person to be more 'normal' and therefore be included. As ND people, we are much more than a deficiency, many have skills way beyond the average person, but no, this will not be taken into account. No-one will be interested until such point as your child can be useful to others - by which point many ND people are utterly disillusioned.

Honestly, OP, it's very much on you to nurture and develop those skills and try and protect him for the narrative that he is lacking.

Hmm, I'd say the opposite. The 'can't do' list is not really consequential stuff for a 3 year old.

Ease back and let him be himself. The only thing I'm really concerned by is nursery suggesting ECHP in preparation. I've never heard of this happening so soon,

The way that the OP's child is learning is most likely causing the speech delay. Gestalt learning is prevalent in hyperlexic children. They don't learn word by word, they learn blocks of words, a whole sentence, a whole group of animals etc. It takes much longer for their brains to organise and use the word. When they do use the words, sometimes for hyperlexics (not all) they are just repeating memorised content vs understanding the meaning of the word, so the process can be very slow, and presents as a speech delay.

Yes. I think I'm missing something important here. Your child sounds like he is doing fine and you sound hyper focussed on if this is ASD or ADHD. I don't really understand your worries, other than you could try and put your focus elsewhere and see how this plays out.

Could your DC just be quite intelligent in a way destined to probably do well in English. That could be a good thing? Differences in development and strengths and skills are normal and good and healthy.