Am I in denial re Autism?

[Mintypanda]

Hi there. I’m looking for some assistance or advice. My child (5) has a long history of social and behavioural difficulties starting in childcare. Most of the difficulties occur in busy settings with lots of other children present and things are manageable at home. Staff at his current setting and nursery are dropping a number of hints to suggest he is autistic, mainly due to his “own agenda” tendencies and limited interactions with peers. To me his difficulties suggest neurodiversity but more in keeping with ADHD. As an indication-

He seeks sensory input through oral stimulation primarily and lots of movement- but has no other sensory aversions. He’s a fantastic eater and has no issues getting hair or nails cut.

No history of language or motor delay. Always noted to be socially motivated, smiley child by friends and relatives.

He seeks novelty rather than routine and isn’t remotely phased by a change of plan.

He has no special interests or fixations of any kind.

He is extremely reward sensitive to the point it is like a drug to him.

I’ve seen him play with peers at birthday parties- mainly chasing / physical play thay is typical for boys his age. He does get bored quickly and tend to move on from these interactions rapidly.

In school he wants to do his own thing mostly and can become extremely dysregulated throwing items, hitting out, etc. to be this suggests poor impulse control / impatience / immaturity that is in keeping with ADHD rather than Autism. He reports that his friends “do not want to play with him”

just wondering if anyone has had a similar pattern of behaviour with their child and what the ultimate diagnosis was (if a dx was made!)

Just to add (and bump)

His meltdowns are intense but short lived and often solved by distraction.

He is drawn to danger- jumping from heights, grabbing a kitchen knife, etc. Has “no fear”.

He sucks his fingers and twirls his hair constantly unless distracted / doing something fun.

He plays imaginatively but in quick bursts. Will build a pirate ship out of cushions, play shop/ restaurant etc or “fight the pirate skeletons / zombies” etc (games often have a violent component”

If the school is suggesting an ASD assessment, I would listen. Nothing you have written means DS can’t be autistic. That doesn’t mean you can’t also seek an ADHD assessment - although many won’t assess until 6.

What support is the school providing? What have they tried? Does DS have an EHCP? Has DS had a sensory OT assessment?

They’ve not mentioned an assessment but the use of the phrase “own agenda” suggests to me that they are thinking along these lines. My hunch would be to explore ADHD first given that it seems a more appropriate fit at this early stage? Running the risk of being misdiagnosed otherwise? For context I am ADOS trained with experience of working with children with autism.

Sorry he’s had a sensory OT assessment that flagged up nothing except a potential weak core that has since been ruled out. 🫠

Schools don’t only comment about a child having their own agenda in relation to ASD, so if the schools hasn’t specifically suggested ASD assessment, you may be reading more into their wording than is their intention. It sounds like you need to request a meeting with the SENCO.

Any ASD assessment should consider potential alternative explanations.

Given what you have posted, it was a very poor sensory OT if it didn’t highlight any sensory needs and didn’t make recommendations. I would look at a proper SIOT assessment.

The sensory assessment was accessed privately about a year ago and consisted of us filling out a questionnaire while DS was being observed. The questionnaire flagged up nothing. The biting / chewing behaviours have increased notably of late though. Just always needs something in the mouth- a pencil, anything. I understand that this is seen in pupils with ADHD too. As are difficulties with socialising- but these stem more from impulsivity / attention diffs rather than social communication / misunderstanding (more ASD). How does one differentiate the two? I know no one behaviour can rule out or rule in Autism but from my point of view pickings are slim at this stage- yet he ticks multiple boxes for ADHD.

I'd watch and wait - normally a child needs to be at least 6 to be assessed for ADHD, and I agree with your thinking process.

You have inferred a lot from a single comment. Some children with autism follow their own agenda. Some children with ADHD follow their own agenda. Some neurotypical children follow their own agenda.

You don't appear to be in denial. You just don't feel it's necessary to investigate autism at this stage. And that's perfectly fine. It's unlikely that anyone will consider ADHD at this age, though this can be area dependent.

I think it would be a good idea to have a conversation with his teacher and senco about autism and ADHD. Some teachers are essentially told not to discuss it with parents though.

There is a level of overlap between ASD and ADHD, and some have both. Only proper assessment can rule in or out.

Yes, sensory needs can be seen in conditions other than ASD, including ADHD. The SIOT assessment you had wasn’t brilliant from the sound of it.

I would request a meeting with the SENCO. Not just about ASD and ADHD but to discuss support which is based on needs.

Things are moving already as regards an EHCP due to the extent of his behaviours and perhaps I have read too much into “own agenda” which from my point of view as a professional reads as code for Autism. At the end of the day he needs a bit of help irrespective of diagnosis. I guess I’m wondering if any parents have had a similar presentation to mine with a resulting Dx of ADHD rather than Autism- Im sort of questioning my own judgement here given my background in Autism but also recognising that being a parent can blind you to certain things relating to your own child!

I suppose something to bear in mind is that aspects of ASD and ADHD can kind of "cancel.each other out" making the presentation confusing.

Speaking as the mum of a verbally very articulate AuDHD child here.

E.g. will decide to organise a bunch of possessions by size and colour but then lose interest/get distracted and wander off.

Thanks needlenardlenoo. It’s funny he’s never spontaneously ordered, categorised or lined up anything. His older sibling would have done this a bit. He never insists on any kind of sameness- regarding clothes, foods, routines, needing things done the same way. He will request that we “mix up” bedtime stories so that they have different endings etc- that’s about the only thing.

I see a lot of paperwork from schools. Schools don’t only use ‘own agenda’ when discussing autism. I think this is where you need to have a conversation with them rather than trying to read between the lines - if you are involved in ASD assessments, you are going to see it said in relation to ASD but it doesn’t mean it isn’t also used in relation to other difficulties. The school may not be suggesting ASD at all.

In our area, ASD and ADHD can be jointly assessed. I suggest you push for a joint assessment and see what comes out of it when you finally get to the end of the queue in a few years!! I agree, though, that it sounds more ADHD, but better to get onto a joint diagnostic pathway now so that all aspects of needs are considered and assessed.

I can only second previous posters who suggest to assess together for ASD and ADHD. AuDHD is very common and looks very different from 'pure' ASD. AuDHD can present as a very social child that craves novelty, change and social interaction but that still finds all this draining, unsettling and disregulating at the same time. You can then get the situation that they try to self regulate by running/jumping/climbing etc and that they become moreimpulsive and give into it, what can lead to dangerous behaviour, as the underlying ASD basically ramps up the ADHD. There are usually subtle signs of ASD behaviour - e.g. that 'other children don't want to play with him' might be one. This could simply mean his ADHD is getting in the way, but it could also mean ASD traits, like he could lack flexibility to adjust to what they want, or doesn't understand nuances in social communication despite being overall sociable and chatty.

Thanks folks. Unfortunately joint assessment doesn’t seem possible where we are- I don’t want to give too much info away- either privately or publicly though I imagine professionals are open to the possibility of either / both at assessment.

If you had an ADHD diagnosis, would you consider medication?

I would. Obviously would closely monitor for any negative side effects but I am in absolutely no way anti medication

Well, in that case, it sounds like the most crucial diagnosis to explore is ADHD. It will probably take years, though, right? But it would give one diagnosis, which can be useful for accessing some support / adjustments, and if you're willing to try medication, then the ADHD diagnosis is crucial. And then you'd also be in a position to see what he's like on meds, and if any ASD traits become apparent when the ADHD traits are less pronounced.

We are willing to pay privately, medication is possible via this route as you can use a joined up approach with the family GP. He’s absolutely wrecked a room today and had to go home early. The school aren’t playing ball at all, they won’t listen to any of our suggestions of things that work well at home (individualised reward charts, countdowns, gamifying things, having a sheltered quiet area within the classroom, reducing expectations to a degree), they basically just want a TA to babysit him for the day. They don’t have anything positive to say about him whatsoever which is incredibly discouraging.

Has anyone managed to get ADHD medication for a 5 year old? For example from a private paediatrician? It really is the most fitting Dx for him I think, it’s like in a busy environment his brain goes into overload and he goes bananas. He can’t figure out what to focus on.

That's a crap school! You shouldn't consider medicating your child as a solution- medication is something to consider when behavioural interventions to change his environment have failed. Do you have a legal rights regarding education to refer to here? You weren't keen to state where you are . . . I think ADHD diagnoses and medication are only from age 7 in some places anyway, but exceptions always exist.

Oh it’s such a crap school. It lives off the reputation of being in a leafy middle class with massive selection effects. It’s awful for SEN. We really regret not sending our kids to a less salubrious school in the locality. I know I am desperate for a quick fix. We manage things quite well at home so it’s school that’s the concern.

If affording ongoing prescriptions would be an issue, be aware many GPs will not accept shared care for those privately diagnosed and titrated now.

Many won’t assess for ADHD until 6.

When you say “things are moving already as regards an EHCP”, do you mean DS has an EHCP already? If so, the special educational provision DS requires needs to be in F. If you don’t mean DS has an EHCP, has an EHCNA request been submitted to the LA? Even without an EHCP, the school must make reasonable adjustments, and if it is a state MS, they must make their best endeavours to meet DS’s SEN diagnosis or not. If the school is ignoring that, follow the formal complaints process.

I’m in a different country so it’s not an EHCP but it is an equivalent. We requested a full term of in house school support with advice from external professionals before pushing the button on an EHCP so as to establish trust with the school and ensure they will actually do things and not just use the CA to babysit. So we’re kind of in a stalemate as they keep saying they don’t have the resources to do anything additional- however basic. An Ed psych was in recently and I would be hoping they offer advice thay the school can put in place