Does ‘behavioural’ probably mean ND?

[PaddingtonBearLovesMarmalade]

Sorry in advance for the long post. My DS is 21 months. He’s had some sensory seeking type behaviours since he was around 6 months but nothing that we’ve ever worried about, as we thought it was just a mixture of normal baby behaviour and a quirk of his character. He would chew my hair or shove a load of my hair into his mouth, followed by his thumb, when he needed comfort or wanted to go to sleep. We got him a stuffed toy and he would pull bits off with his teeth until a piece would get stuck between his two front teeth, and then he would settle to go to sleep. He has done this every night and naptime for months. He also searches for dog fur and chews on or eats this as well if he manages to find any.

Recently, he stopped chewing his stuffed toy but this coincided with him beginning to pull his own hair out. He forcefully rips out tiny handfuls and has given himself a very noticeable bald patch that covers most of his crown. He has also started biting his nails until they’re really short, even after I’ve clipped them. He was only doing it in his cot but now he does it when he’s frustrated or if I’m asking him to do or stop doing something he doesn’t want to.

I took him to see the GP who has ordered some blood tests to rule out low iron, but suspects it is ‘behavioural’. She said that it’s a lot of hair for him to have pulled out in such a short space of time and that, with an older child, they would be looking at a therapy type route. But, as he’s so young she’s a little stumped, so would be doing a referral to paediatrics as it requires more of a specialist approach.

He’s a very lively child, extremely sociable and already speaks in short sentences. Lots of people comment on his speech, including professionals, who have said he’s ‘advanced’ for his age. He doesn’t really have many tantrums and plays well independently. He is usually a really happy boy but has started getting frustrated quite easily; for example, today he didn’t want me to change his vest so tried to headbutt me a few times which is out of character. He does like to test boundaries (we’ve not had a meal where he hasn’t thrown food for almost a year, despite trying lots of tactics to stop it), but I’ve just been putting that down to normal toddler craziness.

I’m feeling confused and emotional about the whole thing. I’m not sure I really know what ‘behavioural’ means and I feel like maybe I’ve done something wrong to cause this. I just wondered if anybody has had similar with their DC or could shed some light.

I can tell you with confidence this is not you!

The GP genuinely doesn't know what's going on. At this age it's really difficult to know and often things aren't clearer until the kids are a bit older.

There could be lots of reasons but you'll find that in good time your own instincts, learning and reading to try understand this is going to help.

Let's say your child is ND, the GP is highly unlikely to have any idea, even a pediatrician I would not trust to just tell you straight off what's happening. The only way I'd feel confident in what anyone said is after an assessment by an accredited, qualified professional with expertise in assessing for Autism and or ADHD. It can be difficult at this age as you can't assess certain things that are more obvious when children are slightly older. Some things here could be attributable to age, communication struggles outside of Autism.

It can be worth approaching the situation as if the child is ND and see if anything improves. That's usually reducing demands, minimising sensory overload/ stressors. Worry less about what they should eat and allow more what they will eat. Reduce the battles basically. Let them wear the dirty vest and don't fight it. Autism/ADHD for many young people is about autonomy and control. Just give some control back. E.g wear the dirty vest and tackle changing that another day.

I really can't remember how well you can communicate with kids this age about what they want 🤦. But the food- what is it about the food, the choice, the timing, he's unhappy about. I know easier said than done.

Hello, please don’t think you’ve done anything wrong. To be honest, apart from the hair pulling annd eating everything else you’ve said sounds like a typical toddler.

My DS is 2y9m and as I’m far as I’m aware neuro-typical, he goes to nursery and passes all his development reviews and progress checkers.

He had some things where at some points I was like “is this a sign of ND?!” He loved putting sand in his mouth and eating it (who likes the texture of sand in their mouth?!) - this stopped just after his second birthday. He also has some sensory seeking things like he likes to stroke our skin to calm himself/get himself to sleep, he hates his nappy being changed, sometimes just doesn’t want his clothes changed, doesn’t like his hair being brushed. He also used to throw his plate of food on the floor most days from about 14 months to 2.5 years and it drove me to despair - so feel your pain.

However, my son has great eye contact, speaks in 5 word sentences, plays on his own and with others, engages in imaginative play, likes chatting to people and his favourite phrase at the moment is “what you doing mummy?” Followed by “I can help!!!” M, he doesn’t care massively about a break in his routine, he is a chilled happy boy (obv with a mix of toddler tantrums for good measure, but he is able to calm down from them quickly and then explain why he was upset and the emotion he was feeling).

sorry to make it about my son, I just remember being so worried about him at around two years and have seen SO much progress since then.

I wonder with your son if

1. you say he doesn’t tantrum much, but this is actually a very typical way for toddlers to react as they process their big feelings. If he is not doing that maybe the hair pulling is a way to let out these frustrations
2. if not, maybe it’s just general sensory seeking. Whilst sensory seeking is a symptom of autism, on its own it is not an indicator of it, and many kids who are neuro-typical have sensory seeking behaviours, I certainly think my son is.

Id go with the referal and see if there is any support for the hair pulling, but please don’t beat yourself up - it sounds like you are doing a great job!

@Tittat50 Thank you. I just feel so responsible somehow.

In terms of minimising overload and stressors, I do try that anyway as those are things I struggle with. We have quite a loose schedule for him because more strict routines weren’t working. He goes to bed later than I’d like because when I was putting him to bed earlier he wasn’t sleeping and was getting frustrated. The food battle is tough but I’m not too concerned about what he eats. I cook lots of different things for him as I never know if he’ll like it or not. He’ll try most things but I know he’ll eat porridge, bananas and blueberries, so he has those most days at some point. He definitely fights for control, even if it’s something that he usually wouldn’t bother about.

His communication is a lot better than his same aged friends but I don’t know if this makes it more difficult because he gets frustrated quickly if we don’t know what he’s telling us. I have no idea what the food issue is as sometimes he’ll throw things he likes and then get upset that he’s thrown it.

@FromWalesAndBackAgain Thanks for the reassurance. I’m in a tough position where I don’t want to read too much into things but then I also don’t want to miss anything that’s significant, and let him down.

I had put loads of it down to normal toddler behaviour although other people with young children often comment on his ‘activeness’ and his advanced speech. Now the hair pulling has started I’m wondering if I’ve been too blasé about it all.

So it’s probably not fair to say he doesn’t tantrum much. He has multiple tantrums a day but they are very short lived little outbursts. It’s just that a handful of times he’s had full on kicking and screaming meltdowns that have gone on for around 20-30 minutes. These are very rare though.

I know I’ll have to wait until the blood test/referral to get any proper answers but thank you for the vote of confidence.

He sounds very similar to ds at that age. He also used to love running my hair through his mouth, until he was definitely junior school age. I suspect he probably still would if he wasn't 17yo and knows it isn't really sociably acceptable 😀

Ds was diagnosed with ASD and ADHD, but not until he was about 12/13yo. In both cases they described him as just over the threshold for diagnosis.

He's my #3 and gorgeous, a bit quirky, has a lovely group of (also quirky) friends both at (mainstream) school and at his clubs. The only thing I'd change about him is I'd love him to have a shower more often and without being nagged...

@MargaretThursday He sounds lovely. When did you realise he may be ND?

@PaddingtonBearLovesMarmalade

I was suspicious from about age 3, but was told that because he had glue ear, that the behaviour associated with glue ear mimicked ASD behaviour.

Then when he was at school and the glue ear was better, I was told "he's a summer boy; he'll grow out of it."
It's one of my suspicions why summer boys do worse. I watched as winter or even spring boys were referred who were similar to him, but when asked I was just told "summer boy". And he did get better, but still I just felt there was more to it.
Eventually he was year 8 when he was going on a small trip, leaving at about 5am in the dark with about 19 others (youngest, and also mostly girls). 19 pupils stood round listening to the teacher, and one boy (ds) hopped round on one leg on the outside. And I thought "this really isn't age appropriate" and went to the GP as soon as I could get an appointment and he was referred.

I do regret not pushing earlier. I think he'd have had a better school outcome - hence me suspecting "summer boy, he'll grow out of it" does mean they don't get the help as early as they need.

What were the main signs when he was 3, if you don’t mind me asking?

I think that’s part of what I’m worrying about, if he does turn out to be ND, that we’re going to have a big battle. I’ve seen a couple of people close to me fighting for a diagnosis and the support that comes with it. I just want to know how best to support him.

We’ve had a new development overnight as well. When I got him up he had loads of holes in his pyjamas. I asked him what had happened and he showed me by biting a new hole in the top.

Sensory issues was probably the biggest.
From the first time we went down to the beach, he hated sand. He was only 10 months and did not move off the blanket we put down although he was normally a runner.
He's 17yo now and would walk into a fire rather than take one bare foot footstep onto sand.
But noise was a big one. He'd put his hands over his ears (which could have been put down to glue ear) or react badly to sound.
Hair (usually mine) through his mouth. Rubbing his face into me or other things. Licking things.
He ate most foods, but those he didn't it was texture rather than taste iyswim.

Obsessions: At 3yo it was Red Arrows and Concorde. He still rather likes them but has other interests. He was watching documentaries on them and would tell people details, and by 5yo would be reading adult books about them. He would watch particular documentaries over and over again. He could spell both Red Arrows and Concorde before his own name.

He flapped his hands. I was told this was still in the normal age for this. He grew out of it about 5/6yo, although had a brief phase of doing it again aged about 10yo when his sister reminded him "you used to do this all the time...". Thanks! 🤣

He liked spinning things. If he was in the buggy, he'd often be leaning over the side to watch the wheels go round. He preferred to crawl with a car in each hand, again, bent over to watch the wheels go round. I remember him telling me that working in Kwik Fit was the pinnacle of success (not his words, obviously) because they had wheels all day.
He also sometimes span himself. It tended to be more when tired.

I remember him being petrified of the first bouncy castle he saw. Tbf it did have a face. But I was expecting him to love the session and all he did was back into a corner and stare at the bouncy castle.

Needing me. He really did not like going out of the home (still isn't keen) and preferably staying with me. He got scared very easily if he was on his own. But he also hated holding hands. Rather strangely he started liking holding hands at about 10 when most of his peers were growing out of it.

Hated change. If we were going out, I'd tell him that we were going out. Then 30 minute call, 15 minute, 5 minute, 3 minute, 2 minute, 1 minutes 30 second, countdown from 10. He still struggled with it.
Changes of plans or change to normal routine would have him face down in my lap not wanting to move.

He did push/hit and even occasionally bite. Normally it was when he was overwhelmed or if someone was really crowding him. I think the biting was a bit sensory unfortunately, as he used to bite (normally gently) my shoulder when he was overwhelmed.
Things like soft play used to really get him overdone. When he went to school, if he was invited to a soft play party, I'd ask the parent if they minded if he came a little late. He had max 45 minutes in a soft play before he was oversensorised and would become wild.

When he started school he would retreat into being a dog. The head said the first conversation she had with him was in barks (she thought it quite funny). He would do this I think to retreat from people.

One odd one which I've never really worked out is he hated right the way through being told to wear anything other than uniform to school. Uniform, own clothes: fine. Red for Red Nose Day. No way. First time I found that was aged 3yo at preschool, I mentioned it, and he said "no". I thought it was just a reaction, but for the first time ever he didn't just put the clothes on that I'd put out for him to wear. He changed them all, including the (almost entirely black) socks because they had a ring of red on. That continued right the way through primary, when asking him to wear a Roman costume/Christmas jumper/Blue/anything else was likely to get him worked up to the point of vomiting.
I suspect he'd have been the same at secondary if they'd ever had those. The junior school had far more than enough (once we had 3 in a fortnight) for both, and he missed 90% of them due to vomiting on the way into school or in the first few minutes of school, and no he wasn't inducing it, he was just worked up.
Oddly he'll wear anything on stage with no problem at all. Tights, weird hats, dress, tunic etc. Not a peep from him.

But his speech was very good, he had fantastic eye contact from babyhood, loved looking at faces (I used to say as #3 he had to take any attention he could, but he'd chat to a face in a picture or a soft toy as a baby), had friends, did well at school.

So he was and is gorgeous, and at times very funny. He's got a very funny turn of phrase. One of my favourites was told to me by a teacher. He'd been given permission to use a laptop at school, and they'd just had a test where he'd gone up 4 grades, and the teacher commented on this. One of the others shouted out "well we'd all do better if we could use a laptop; it's not fair."
He replied. "I am allowed to because I have ASD (not strictly true). I don't know if it's catching, but if you come here, I'll give you a hug and we'll see if it is."
Apparently nothing more was said on the matter.

When he was diagnosed in all honesty it was a relief. All the little things made sense. And it helped him too. It gave him permission to say things were overwhelming, so he could back off rather than try and push through and then get totally overwhelmed and act out. It's been a positive outcome for him.

He did say to me "now I have an excuse to be anti-social" and I replied "no it means you know you need to work harder/differently on some things."
But it's given him permission to be himself, and that has helped him immensely.

@MargaretThursday Sorry it’s taken so long to reply. It’s been a bit chaotic. Thank you for sharing so much detail. It’s really helpful to see that they don’t have to ‘tick all of the boxes’ to get a diagnosis. Your son does sound wonderful and I like that he advocates for himself in a witty way.

My DS definitely likes flapping but again I’ve been putting that down to normal toddler behaviour. He does have obsessions with things but could also be toddlerness.

His blood test has finally been booked in so at least that’s one step further.

My grandson (I parent him - now aged 9) was similar. He didn't have the same fixations as yours but looking back had less startling ones - totally fixated with water for many years - not bathing in it unfortunately but playing with it. What drew me to your post was your mention of his speech and language skills. Mine was a very early talker, putting words together comfortably at 13 months. I remember he got a balance bike for his second birthday because he was also very physically quick too - didn't walk until 16 months (prolific crawler before that) but running, kicking a ball, jumping as soon as he could walk. Anyway he got the balance bike and took one look at it and said 'But nanny I need pedals'. His sister has just turned 2 and her speech is fairly typical of a 2 year old - putting 3 or 4 words together but has nowhere near the same level of understanding and sophisticated phraseology as this. At the same time, he never really understood social language - teaching please and thank you was an uphill struggle and he's only just really mastered this over the last 18 months. His 2 year old sister on the other hand just says it automatically at the correct moment. His eye contact is also poor but seems pretty popular at school - very sporty and intelligent though not top of the class as I was expecting from his early language.

It turns out he has adhd but this was not apparent to me until he started school and couldn't focus, rolling around on the floor. Formal diagnosis aged 7 and medicated for school. I suspect probably on the autistic spectrum - very inflexible and routine driven at home though manages well at school on his medication. He doesn't have an autism diagnosis and I'm not inclined to go down that route presently.

For the blood test (ds loves blood tests thankfully as he's had a lot):
Make sure you ask for magic cream. (ds is allergic to it just to add to the complications). You put it on the place they do the test-normally back of hand, and cover it with what looks like clingfilm about 30-45 minutes before the test. It numbs the area (or in ds' case swells the area up for 2-3 days).
They'll normally do it in the back of the hand, and you're best to do both hands (they may ask for the top of the foot too) because often one hand is easier than the other.
If you can just before he goes in, warm his hand (hot water bottle or similar) and/or get him to swing his hand around, then that helps too.

I found at that age the best thing to do during the blood test is bear hug then to your front and hold them tightly with their arms behind you, held by your arms.
That way they can get on without the child seeing, and they're not moving so much.

Ds had a number of blood tests from 10 weeks old onwards, and started finding them fascinating about age 6yo, so watches. He does tend to keel over within around 20 minutes of having them (or injections), so I normally have sweets for him to suck after which helps.

@dogoncouch It’s interesting what you say about your grandson’s physical skills because DS sounds very similar. He was slower than his friends to crawl properly and slower to walk but now he’s got going he’s quick good with the physical things. He managed to use a scooter pretty well the first time he ever tried one and is also able to jump both feet off the ground which most of his friends can’t do. It might be to do with having more practice than them as he just won’t/can’t sit still. Did you or do you find your GS gets lots of injuries? DS hurts himself multiple times every day by tripping over, running into things, jumping off of things, etc. I know toddlers are a bit accident prone but I don’t know how many bumps are too many.

@MargaretThursday Thank you for the tip! I contacted the GP and they’ve sent some magic cream over to the pharmacy. His blood test has been moved, so just a bit longer to wait for that. I think the bear hug is going to be necessary to keep him still. I was meant to have MIL going with me but it’s been rescheduled to a day when she has an appointment herself, so I’ll be braving it alone with DS2 in tow as well.