ASD/ADD/Quirky

[Moanyoldcow]

I'm sorry for posting here - I'm just so confused that I don't know if im coming or going.

My son is 4. He's just finished nursery and is starting Reception in September.

For the last year his behaviour has confused everyone he's come across - SALT, Occupational Therapist, Teachers at nursery. He's just started with a new childminder who thinks he has ASD (albeit a high functioning variety - please forgive me if I'm using incorrect terminology as I'm quite new to this).

She's basing this on him not being massively sociable with the other children and his obsession with cars plus an unwillingness to join in games. He's not disruptive or violent or anything, just quite 'firm' if he doesn't want to do something.

He has no issues with routine changes
Reads emotions very well
Speech is excellent
He can read already (level 1 books cover to cover) and tries to sound out words
Loves physical contact

But he has some issues with texture and eating
Quite encyclopaedic knowledge of cars and planets
Has a ridiculously accurate memory and likes to repeat things he's seen or heard

I can see how he's confusing everyone but all the professionals are just 'wait and see'. But if he's needs help I don't want to let him down.

I suppose my AIBU is have you had a quirky child who has had an ASD diagnosis and how hard was it to get through to HCPs?

I'm not a mum, but I do have ASD, and I just wanted to say; don't panic. If he's communicating and developing well, then that's great. If he does have ASD then there are modifications he will have to learn, but it varies massively from person to person.

In my opinion, communication is the biggest 'learning stage' for a high function person with ASD, so if he's doing okay with that then great. You can't treat ASD, you can only learn to modify your symptoms and integrate better. For some folk, it is just an advantage - like being a super person!

There will be plenty people who can advise on the how to's of getting it diagnosed. I was diagnosed as an adult, so I can't help with that. But I just wanted to say, keep calm, and embrace his special things. It's hard to describe the utter obsession that people with ASD can develop, but from the inside, it is all encompassing. If we take a severe interest in something, we need to know everything...or collect everything. I massively overspent last month because I needed to buy all 24 issues of a manga that I'd just got into. Stupid, cause I'm still only on book 2, but buying all 24 was what made me feel good. It's crazy from the outside, but logically from the inside.

Can I also point you in the direction of a book, or a series of 2 books actually, which have the best portrayal of an individual maturing with ASD? It is called the Roosevelt Series, by the author Heidi Cullinan. The second book - Shelter the Sea - is particularly good. Her analogy of autism being like having an octopus on your brain, and when things make his autism trigger the octopus starts wriggling its tentacles around. He needs to calm the octopus, make deals with it - learn how to find a way to cope with troubling situations in a way that won't upset the octopus (his autism) - and live in harmony with his octopus. Okay, that sounds weird, but trust me - the analogy made me smile and the character, Emmet, is wonderful.

Carry the Ocean
Shelter the Sea

Apologies if that is all of no use nor interest, but reading her describing disabilities in terms of the 'superpowers' they give the individuals is something I really love. I've never thought of how my autistic traits are actually things that make me special, so I can never thank the author enough.

wrenika - that's so helpful - thank you.

FWIW, I have no issue or stigma attached to a diagnosis - I just want him to achieve the best he can and therefore I want to do whatever's necessary. It's just hard to make progress in this 'wait and see' climate.

Thank you for sharing that - it's been so helpful

My son was diagnosed at 10, but had already been with Camhs for 4 years - they just didn't like 'labels' which was useless for getting support in school etc.

If it's just 'quirks' at this point and it's not interfering with his life at all then watching and waiting may be best.

Try reading about sensory processing disorder actually. He ticks a few boxes in this and you can find ways to help him with his sensory sensitivity.

He sounds very like both my DSs at that age. Neither has autism but both are academically gifted and somewhat eccentric in adulthood.

My sister said DS1 would be a potty university prof when he grew up. He is.

How to put this? I don't necessarily see anything very confusing about that description if it turns out he is in the spectrum.

Funding is a huge reason for the "wait and see" especially with schools, but not the only reason.

My own feeling is if you share the childminder's hunch, get a bit sharp elbowed about establishing the truth of the matter. It's good to know the truth and for DC to be unabashed about their identity, whatever it is. Earlier is better.

Should add; Don't try and second guess a proper diagnostic assessment but do listen to your gut. Mainstream teachers are very, very far from having SN or Spld expertise, so don't let them sway you either way. Do bear in mind there are a range of related conditions, some of which you haven't even heard of yet. (If that's remotely a possible line to walk)

What Serf said. Waiting times can be very long so do pursue this now. It's so sad when parents delay and then the kid reaches crisis and has to wait 2+ years for a diagnosis.

Diagnosis isn't a magic key to help, but can be a good signpost in the earlier years and can help a child feel more comfortable about themselves and their differences.

Thank you all. It's very kind of you to respond.

My gut is he has some sensory issues but not ASD. I'm not sure I'd use the term 'gifted' but academically he is quite advanced according to his teachers.

The thing I think the HCPs fund confusing is his inconsistency too. One day he'll be Mr Sociable. Another day he'd rather play alone.

But things like potty training was easy (3 days, never wet the bed), he can express how he's feeling (frustrated, sad, tired, happy etc) and these seem a bit contradictory for ASD.

I think I'm going to take him to the GP and talk it through with them.

Dressescrab - how funny! That's what my grandmother calls my son - The Professor.

But things like potty training was easy (3 days, never wet the bed), he can express how he's feeling (frustrated, sad, tired, happy etc) and these seem a bit contradictory for ASD.

Not necessarily. Nothing there to point either way.

Thanks Serf - I'm repeating what the bloody OT said so obviously I'm getting some misinformation.

Hard to say really. If it's more high-functioning (Aspergers) then it tends to be diagnosed later (around 8) as early on it's hard to tell if it's just quirkiness/sensory issues or ASD. DS was like that so not diagnosed until 8. We thought dyspraxia and sensory processing disorder but in the year before his diagnosis things became clearer so we took him to a private psychologist. Either way it's made very little difference to his life - he's a bit quirky and struggles with social interaction but he's a normal kid really.

I have a ds and a dd with ASD and then I have my lovely odd quirky ds as well (not that the two with ASD aren't lovely as well) and two more NT dc besides. My odd ds is very gifted,has a phenomenal memory and is very much like rainman without any of the social difficulties (incredibly sociable and popular) and none of the rigidity. He has a somewhat unique perspective so you'd take him somewhere hugely exciting,ask him what was the favourite bit and he'd say something like "Junction 27 on the M1" which he'd probably seen fifty times before. Because of having siblings with ASD he was watched carefully but he doesn't have ASD both the professionals and myself agreed on that.
When discussing our family among ourselves the dc often rate themselves in terms of weirdness though and 9 times out of 10 odd ds rates as far more weird than the two with ASD

Ds1 was like this, a bit quirky but not really enough to have a clear idea why (without the benefit of hindsight).
As he got older, particularly secondary age, he kind of developed into being more quirky and demand avoidant, to the point where he is now, at 16, very limited.

I'm not trying to predict this for your son, and I feel like I'll look dramatic for posting this, but if at school you think he's struggling, even in a way that you can't quite put your finger on, it's worth pushing for investigations and appropriate support. If I'd been on MN 12 years ago and someone had posted this about ds1, we may have had a chance of helping ds1 whilst he was receptive to it.
Ds3 is also very similar, we often feel we are waiting for him to reach some sort of crisis point so we can swoop in and handle things better than we did for ds1.

It's tricky.

I'd say only believe what an educational psychologist or a specialist paediatrician tell you (understanding in this field is developing at a rate of knots) but of course you don't have access to one until you have access to one.

I was diagnosed autistic a couple of years ago after a childhood and adolescence of hidden difficulties. I also had advanced speech and reading abilities and was very friendly as a child, as well as having major sensory issues with food and and encyclopaedic memory for facts. So he may or may not be autistic :) it's wonderful that you have no stigma around the diagnosis though, he's lucky to have you :)

I'm autistic and ADHD.

Some of what you wrote sounds like me as a child.

OK. DD. Always resilient. A bit of an Island. Used to sit between the ADD boy and the ADHD boy in infants. Very bright but didn't always follow through the glimpses of sheet brilliance. Three schools. Not one single teacher ever expressed a concern. Well behaved, quiet, high performer.

After GCSE's found she had been self harming and was very depressed and anxious. We did the whole Shebang. Cutting, overdosing, anorexia. CAMHS didn't want to know. After an od that resulted in an A&E assessment her psychiatrist fully assessed and diagnosed ADHD ADD variant. Some ASD traits but not enough for a full diagnosis.

Psychiatrist was private CAMHS didn't want to know. When I told the CAMHS twit nurse of the diagnosis she said "well now I think she's a bit old for that sort of disgnosis". I kid you not.

It was a massive turning point. She is 19 now and so much has changed with 20mg of Ritalin. Notwithstanding the therapy, the fluoxetine, the massive learning curve. But that was it really.

On reflection DH probably has some v high performing ASD traits, I think DS and I have some ADHD traits. DD is hoping to have a career in academia.

Follow your childminder op. You may have to pay for a proper diagnosis to ensure your son gets the support he needs. If you can't then research and push, and push. Follow up every appointment in writing. Question everything. Ask for everything to be explained by evidence based research

You really really will need a psychiatrist and educational psychologist involved to get anywhere.

I remember getting the "wait and see" message when my ds was that age. He was eventually diagnosed ASD age 21. It varies a lot from area to area as to how easy it is to get a diagnosis, GP is the best place to start. Some people end up paying privately as I did.

Thanks so much everyone. I'll make a GP appointment for next week. I'd rather get on with it then.

He's my son and I think he's awesome and a diagnosis won't change anything other than how I may be able to support him.

All of your feedback and experience is very much appreciated.

He could simply be super bright and mature for his age. It's isolating if you don't "get" kids your own age. If his language is more developed than theirs, they're not going to "get" him either.

I have a quirky child just like yours. He's now 14. He is very clever, top of the class for everything and a photographic memory. Knows more about Lego, aircraft, WW2 and politics than most adults never mind most teens. Zero social skills. Totally unaware of what other people are thinking or feeling, or how his actions impact on them. Finds it hard to make and keep friends. We call him Sheldon (not to his face) as the TV character is just like him.

We've not pursued a diagnosis for him although I firmly believe he has Asperger traits or some other high functioning autism traits. He's ok at school, has a friend who is just as quirky as he is and we are trying to help him with social skills. I don't see that sticking a label on him would bring any practical help which he's not getting already to be honest.

My youngest sibling was very much like your son at that age. She was assessed, but we were told she was not on the spectrum.

3 years ago, we had to begin the process again, due to her school raising concerns. A week ago, aged 13, she was diagnosed with DCD, ASD and a sensory processing disorder.

He's my son and I think he's awesome and a diagnosis won't change anything other than how I may be able to support him

We feel the same here too. We've found that alot of our issues have also come from other adults/people we don't know not knowing/understanding thinking they can take the piss I've even cut friends off because of the way they treated her I am still raging

It's been a long journey, but we're there now and the most important thing (to my sibling) is a loving, supportive family.

You sound like a wonderful mum and your son is really lucky to have you. Best of luck!

I'm not an expert but he sounds like a clever kid who is well adjusted but knows his own mind re games.

Is not liking games an illness now?

I feel like there's nothing wrong.