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??

What is the AIBU here? Feel this post would be better elsewhere.

If you have raised flags for ND and are having this investigated, best to give them all this info and allow them to do their job really. If you find interventions for hyperlexia work - the. Use those interventions. If you do not feel DC has the same struggles as someone ASD or ADHD and that the techniques to help those people don’t work.. then simply do not pursue those options.

If your child is doing well and coping well enough, however they may present personality wise, then I would stop fixating on which specific label they might fit under at this very, very young age.

AIBU because often parents get criticised for denying ASD or ADHD, and I never thought I’d be in this position of doubting it!

He will be assessed for autism at an imaginary point in the future, that is for certain, and pre-school have suggested an EHCP with 1:1 support, of which we as parents totally agree with at this point in time. I suppose I was hoping parents of hyperlexic children who are atypical for ASD or ADHD would have some insight. I feel so alone and I don’t trust the so-called specialists to do right by my child.

But here’s what always gets me, why is hyperlexia not in the DSM??

In general, in the absence of other conditions being able to read early is not a disorder and is temporary. My ds read very early and still loves words and language but it's not as if other teenagers can't now also read.

Yes it sometimes led to some minor irritations in interactions with school over reading records but in general I had far fewer concerns over him and reading than I did with his siblings who struggled to read. I think the teachers too used to appreciate it when he would tale a group of his friends in nursery and sit reading stories to them. I would just try to enjoy sharing books with him and don't let him think that there is anything wrong with him doing so.

Obviously where there are other concerns raised them with his nursery but reading early in isolation I would try to relax and go with the flow a bit.

I definitely feel like you’re pinning far too much on the specifics here. Your DC is only 3 years old. You’ve been focused on this since they were very young. The most important thing is that people are paying attention. You say he’s going to get 1:1 support and an assessment.

You absolutely need to relax. I think as well, you think he doesn’t fit ASD. But ASD is a very wide spectrum and can present in many different ways. Ie, some with ASD are very sociable and chatty. Parents then deny it is ASD because of their own perceptions. ASD, or anything else, should be diagnosed based on the child’s own experience with the world. Not just on how we parents view their experience with it.

Even if he is given an ASD diagnosis at assessment, and you feel it is very specifically hyperlexia without ASD (although a staggering 84% of hyperlexic individuals are also ASD) - you can relax knowing they are aware of ND and he will have access to many forms of help.

With my son it’s not just ‘reading early’ unfortunately, because on paper that looks great but in reality there’s a lot more going on. He’s not sitting and reading books cover to cover for example It’s more the ability to decode but with corresponding significant difficulties in comprehension and communication. From my perspective that’s what makes it a learning difficulty just as dyslexia is, it’s the complete opposite way around.

His entire play used to be based around the alphabet. He just LOVED individual letters and the alphabet, I even know his favourite letter is uppercase Q. It’s also numbers and shapes but he struggles to see past the symbols to understand what he’s actually looking at. For example in the woods we picked up a stick and said ‘look it’s a stick!’ And he replied ‘Y’ because it looked like a Y.

The issue is 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. If it were just early reading I’d be jumping for joy!

Sounds like there is good reason to believe ASD is in the mix here.

Is there a reason you don’t want an ASD diagnosis ?

You absolutely need to relax

This is accurate

Problem is I don’t! Instead I lie awake in the middle of the night and worry about my son, given that the EHCP process is not for the faint hearted and I know for a fact that many children with ECHP’s do not have their needs met even though it’s on a lawful document. No specialist schools full stop, nevermind the fact that my son wouldn’t get into one (there are children with far higher needs than him) and so mainstream is the only option, and if they’re treating him as the little autistic boy then they might be batting at the wrong door. Plus the MS schools can’t even meet the needs of the typically developing children with no additional needs nevermind throwing my son at them. We are considering private but it would really be a lot of discussion and considering as to whether they would be able to meet his needs. It’s tempting to have him in private if it means he is safe and basically happy. I don’t want my bright, happy curious boy made miserable by the failing state education system. Not having a go at individual teachers or TA’s here but the system itself.

I'm hyperlexic.

A general lack of communication skills isn't hyperlexia.

A friend of mine had a child who was also hyperlexic. It just means reading early. Her daughter was very intelligent and her comprehension was also at a high level.

So it sounds like it is probably something like ASD going on and hyperlexia is just one of the symptoms. That is why hyperlexia itself in isolation is not necessarily an issue, but all of the other social issues around his behaviour are more challenging. It sounds like words and letters are his special interest at the moment. That might change, or it might not. I would be led by the nursery who seem to be willing to put the work in to get him an EHCP.

You were though asking about children who had hyperlexia in the absence of ASD/ADHD, and in isolation it was not an issue. It is still a matter of debate whether ds would meet diagnostic levels for ASD but he was very interested in words and letters from about 9 months onwards and did read very early. His decoding was ahead of his comprehension but only a little and it had caught up by the time he was in school.

I’d be more than happy for him to have a diagnosis of ASD if it were the completely appropriate diagnoses.

To my understanding they base a diagnosis on significant signs or traits within 3 main areas:

Social differences
communication differences
restricted and/or repetitive interests

It’s completely plausible he meets this criteria, so I to n it’s likely he’ll receive a diagnosis, but the more I see him develop through his hyperlexic learning style, the more I see conflicts with the ASD varying profiles. I’d even go as far as to say ADHD and hyperlexia fit him more.

Have you considered that you yourself are ASD?

Your bright, happy, curious boy will be absolutely fine. I think sitting up all night stressing over what specific label is going to make his life better and who will or will not help matters isn’t going to help him. He needs you to relax and just be his mum. Advocate for him, but don’t obsess over him.

My son was diagnosed at 4 and he has came on leaps and bounds. We have everything in place we can but really, we just let him be him. Hovering over him and analysing his every move and every development (“was it on target? Was that a stim? Is he matching peers?”) will add pressure he doesn’t need, to BOTH of you.

In the end, it’s all bloody fine. Advocate for him and help him, but let him be. Celebrate who he is rather than trying to figure out what he is.

I think this would be me too, when I look at my childhood. I could certainly sight read and confidently before school and thought phonics was a fun different way to learn. I never thought I was different, and really was I? In contrast to my son I was verbal and had good /equal comprehension skills to my reading ability.

Do you though remember your experience of reading when you were three? You will probably encounter many more issues over the coming years whether he has enough to get a diagnosis or not. He will also change in the coming years almost beyond recognition. All you can do is advocate for his needs now and although I know it is almost impossible to do, try not to lose too much sleep or tears over it.

It’s so much easier said than done, I can’t help but feel that all I do is try to research and help him and advocate to the point that I’m mentally exhausted. All of the therapy is down to me as the NHS are not actively intervening, I do try to just enjoy him and love him just the way he is, just want to best for his education given that it’s such a major part of a child’s life.

It can be very difficult to tell at that age. My hyperlexic child has always been very obviously autistic. My other child seemed pretty normal until about year 4 and then all his classmates developed more complex social skills that he couldn't keep up with. He's only just been diagnosed with autism at age 22 (for reasons relating to his idiotic father). But what I'm saying is, that sometimes you just have to wait until their environment becomes more difficult for them.

It's not in the DSM because it isn't a psychiatric condition...

It sounds exactly like ASD to me, every child with ASD is different. It's perfectly possible for a child with ASD to be sensory seeking - stimming is a form of sensory seeking. Many kids with ASD like bright, flashing lights for example, mine loved fireworks and I remember randomly he loved seeing clowns doing slap stick at the circus! Kids with ASD can also be extremely sociable and love other kids/people, a lot don't tick every box in the ASD check list! DS never flapped or lined anything up or was obsessed with spinning wheels.

I'm not really seeing why you think he might have ADHD or might not have ASD and I really think you're over thinking the hyperlexia tbh.

Has this been picked up by paediatrics or is it just your observations? Where are you up to with the EHCP application process?
You have another 18 months before he starts in Reception and a lot may change before then. I would suggest you put the idea that he has a specific condition to the black of your mind and focus on which milestones he is not achieving at the relevant stages.

I'm not really sure what you are seeing that conflicts with an autism diagnosis.
You state: 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.
My autistic son doesn't crave sameness or routine, enjoys movement and sensory input, he's definitely autistic though.
School will try different methods of engaging him based on his needs and responses though and not just on diagnosis.

I do think it’s perfectly plausible that ASD is a factor, but I also think that his main profile is hyperlexia with a bit of general ND. ADHD because he in a way prefers disorder and chaos to order and routine. He likes surprises, spontaneity and novelty, and he runs rather than walks, low sleep needs, low attention. In lots of ways I think what makes him appear autistic is the fact that he scripts, and is clearly a GLP and his understanding at the moment is limited, or at least of what he can express.

Been to pediatrics, about as helpful as a chocolate fireguard, helpful to the point of it’s a box ticked and on paper it’s been done. The paediatrician clearly thought ‘not autistic’ until we mentioned he had never pointed (he started at 2.5 but only to label things) and the fact that he was not talking, or he was but in letters, numbers and shapes and literally nothing more (at the time). It was speech and language who referred for an ASD assessment, of which I think is the right thing to do, but want the right diagnosis with all the right information to support it.

I’m no expert but autism, ADHD and dyslexia are all considered neurodivergence’s, and are all diagnosable. ADHD and ASD are considered neurodevelopmental conditions not psychiatric conditions.

Low sleep needs is very common in autistic individuals also.
I'm not sure if you are confused regarding autism symptoms as your description of him sounds like he has many traits.
Once he has his assessment he will be assessed by experts. But school will be looking at the child not tge diagnosis anyway. If the tactics for hyperlexia are yielding results they will use those.
All autistic children are different so just because a child gets a diagnosis doesn't mean they will adopt some unsuitable blanket approach.

The pre-school want to apply for an EHCP for 1:1? He must have pretty substantial additional needs - is he toilet trained and does he have challenging behaviour or meltdowns?

I think the reason hyperlexia is not in the DSM as a stand alone diagnosis is because its core features do not present a barrier to learning or participation in society.

“A bit of general ND” isn’t a thing. ND is an umbrella term that covers specific diagnosis, not a diagnosis itself. You can’t just be “a bit ND” on the side. It’s either ASD or something else.