Slight ASD or ADHD or bad parenting? Or over diagnosis?

[Mumof3onetwothree]

My 5 year olds pre school teacher suggested that he might be slightly on the spectrum. He's now in primary school and the class teacher (experienced) doesn't see any problems.I applied for a public assessment and based on pre school report and my form the HSE (Irish public health) said nothing was indicating a disability so they won't assess.
I had a screening call with a very new private clinic ....they said he needs a full (very expensive ) assessment. More established private clinics have no availability.
I did speak to a GP, public OT and public paediatric physio ....both emphatically said they think he's fine and there's massive over diagnosis going on. The physio said one of her children would have met lots of the current criteria for ASD and was captain of the junior cup rugby team and got into medicine.
I took him to a private OT as it was much cheaper than an ASD assessment she said dyspraxia, got me really stressed out and then when her results came back he didn't come anywhere near meeting the criteria and she said he was too young to be assessed and wouldn't meet the criteria when old enough because he would mature more.
It's hard not to be cynical when these private assessments cost so much!

He has the following characteristics
Likes to be in charge of his own games
Plays better one on one
Plays independently with car, jigsaws construction toys etc for a long time
Very bright academically
Often has wee accidents and was late potty training (age 3.5) ...doesn't like stopping his game to go to the toilet
Often acts as though he's not listening (but often actually is)
Has meltdowns after school, or when hungry or sick
Can be a bit aggressive (but I only had sisters so I'm not sure if this is just normal boy behaviour)
Copes very badly with lack of sleep
Drooled for a long time...only stopped recently
Very strong willed
Was slightly speech delayed

I am wondering how children with these characteristics turn out as adults. I find the after school restraint collapse really hard.
Or am I just parenting wrong. I am a gentle person and it has taken me a long time to have firm boundaries and I don't know really understand what normal boy play is like having been surrounded by girls growing up. He also was quite isolated during the pandemic with only his older sister to play with for a long time.

A psychologist friend who used to do private ASD assessments (but lives far away and doesn't know him) said he might be gifted but if I take him for ASD assessment he could get misdiagnosed as autistic.

It is so so confusing and I am cynical at the best of times about private clinics trying to make money out of people willing to pay.

Thank you!

If a diagnosis is needed, its better to get one than not to have one at all so that your family/education settings etc can support your son in the best possible ways suited to his specific needs or requirements.

You are not parenting wrong. If its niggling away at you, I would recommend looking into it, for peace of mind at least.

There is every change he is on the spectrum, i was told repeatedly at 4/5/6 there was nothing wrong with my son, he was just 'quirky' and would grow out of it.

By 7 he was diagnosed as severely dyspraxic, and by 11 had asd/adhd added. He was serious enough to need an EHCP, special school, and now at 17 is in receipt of enhanced PIP.

Does this mean your son will go the same? No, but bear it in mind that things that seem mostly age appropriate at 5/6 may still be around at 7/8/9 and suddenly an issue.

There is also the fact that not all people on the spectrum have symptoms severe enough to hit the threshold of full diagnosis.

Watch him, raise him normally, but don't dismiss stuff out of hand, keep it in mind so if things don't change, and this kind of behaviour doesn't improve, you can revisit assessment.

oh, and 'gifted' is bullshit, absolute nonsense. i was 'gifted' then by 17 was burned out and had a breakdown. Been diagnosed with adhd/asd as an adult.

I have an IQ of 138. Yes, i'm 'gifted' but i'm also neurodiverse and reaping the consequence of burnout.

Someone can have autistic traits, but manage well (through coping strategies that they may discover for themselves as they grow up). I think a diagnostic process leading to a formal diagnosis becomes important if things start to become very difficult, at home or at school or both (due to their traits / behaviour / social / communication difficulties), and then a diagnosis can really help, especially at key times (like transitioning to a new school etc).
Having been through the process, we were told there is a threshold at which a diagnosis becomes important (rather than those below the threshold who may well have some mild autistic traits, but are otherwise coping). Obviously if there are clear processing difficulties then this should be explored, as accommodations can be made in examinations etc.

Sounds very like my son. Also in Ireland. My sin could also have ASD. He hasn't been assessed but gets along well in life. Better one on one with a friend, acts foolish when with a few together.
Totally agree in over diagnosis. Read recently that the number of asd diagnosis among middle class is rocketing as they are able to afford the very expensive assessments.
If I were you, I would go into the HSE system, wait 2 years or however long the wait currently is. By that stage you may have a clearer idea yourself of how he is,especially if you have no immediate concerns.
We didn't get an asd assessment and won't (he is13now). But we did get a psyologist assessment privately for ADHD (not hyper, but the inattentive type). I've very cynical over the whole psychologist diagosises and think we would have got what we wanted as we're paying.
But the benefit to my ds is that he will get extra time in exams and a bit of leeway in school as he was getting in trouble for losing things and not paying attention. He also received a ritalin prescription which has been life (and grade) changing.
His teachers were on his case about not paying attention but he was still performing in tests which they couldn't understand. He's really smart but it's not obvious. Now he is excelling in school. Sociallly I am not sure yet but seems to have made some friendsbut still prefers one in one.

Recommend watchful waiting for now as many of the symptoms are not uncommon in children your sons age (particularly things like not coping well on lack of sleep, becoming emotionally dysregulated due to hunger or illness).
if your son is coping and you’ve been reassured by several professionals then I think just monitor whether symptoms change, whether they become more impactful/less able to cope with in day to day, and then reassess.

A doctor said to me once that the key measurement tool for concern is the impact on the child and his life. And I think that's a really helpful way to look at it, especially when your child is still quite young.

The main issue it seems to me is the meltdowns after school. This could be a sign of ND - ie masking at school - or it could simply be a sign of extreme over tiredness (I put DD to bed at 6:30 for most of her first year at school ... she just couldn't cope otherwise). Either way, I would focus on finding coping techniques for that. Have you noticed that certain things make it easier for him to calm down before hand? Eg a snack, a walk, a car ride etc? DD is NT but she ddid get over tired and over stimulated so it was quite normal for her to go straight to her room with a device for 30 minutes on return from a hectic activity. 30 minutes later she would be raring to go and back to her normal self.

Then, as he grows older, you can watch to see if there are more severe, longer term impacts - his social relationships, his learning, his mental health etc. As you've been told, a lot of ND is hard to diagnose when they're this young anyway.

A lot of doctors, sporty or not, are autistic. I'd say autism is under diagnosed in that group not over!

You're getting a lot of terrible advice. Maybe do some reading on autism and see what you think in a couple of years, he's still very young.

Thank you! The HSE won't assess him as they didn't see anything that would warrant it on the application forms.
Similar forms to the ones we sent to the private clinic who said he definitely needs the assessment!
We live in a wealthy area and the number of diagnosises at my child's school is unreal. The mums have paid privately for the assessments and they stand around outside school at pickup time discussing their children's diagnosises....the children have friends, aren't struggling academically...
The school has moved from giving resourcing to anyone with a diagnosis to giving resourcing based on need not diagnosis I assume because of the massive number of psychologist reports coming in. So even if I paid up there's no guarantee of getting trips to the sensory room or movement breaks which apparently is all he would get anyway because he's fine academically.
The thing that concerns me the most is an article I read about the psychiatrist who merged Aspergers in with autism in the DSM regretting it because in his opinion it has resulted in a massive surge in over diagnosis.
I find it all very confusing but I don't want to do the wrong thing.

Thank you yes it could partly be sleep as he is prone to chesty things which really does interfere when he's not well.

I have adhd op and I honestly don't think you can tell when they are that young and I would just wait a few years and see if anything becomes more apparent.

What is it that you want the diagnosis for op? There's nothing to stop you using similar coping techniques anyway.

The physio said one of her children would have met lots of the current criteria for ASD and was captain of the junior cup rugby team and got into medicine.
It is of course entirely possible to to captain a rugby team, get into medicine and have ADHD / ASD or a combination.

Leaving aside the question of medication for ADHD for a moment, it is worth researching how to support neurodiverse conditions and seeing if you notice any differences by applying those strategies. Look at everything; diet, sleep, safe spaces, now & next boards, headphones. See if anything helps, then depending on how things go, you can push again for an assessment and help in school.

Re: the poster who mentioned someone saying that their dc had potential ASD characteristics however went on to study medicine… I read a book by a genetics professor, and as an aside to the main point he mentioned that there are a lot of academics / professors who have autism or autism traits (presumably as it is an ‘industry’ where you are very autonomous and can focus on a single special interest at an extremely high level). I suspect being high achieving can be a part of autism, in some ways / for some people. So autism would definitely not preclude careers like medicine etc.

I would push now because of the huge waiting times tbh. Still apply strategies and learn about it yourself, but it’s a long process being assessed.

Equally, lots of people will claim someone with HFA is simply gifted, but, if they do have HFA and it’s missed, it can be invalidating because those claiming they are simply gifted don’t acknowledge the more difficult parts that can also come with it. HFA and ADHD don’t necessarily prevent intellectual careers. It massively depends how it affects that specific person and what their interests and strengths are. The hyper focus on certain topics can be a big plus in that situation. Diagnosis can be helpful. The support is needs based, but where he might not access sensory breaks or a one to one, he may have other needs that can be met in another way - for example, ear defenders, putty to fiddle with when listening in class etc.

I really doubt there is a huge amount of overdiagnosis going on. Private diagnosis can mean you never access NHS support for neurodiversity for your child. NHS assessment is a long road and hard to come by. For ADHD, if you’re being assessed for symptoms at home and not school, you need to do a workshop prior to the home assessment. Then after the home assessment, you can go on the waiting list (ours is 4y for ADHD). Prior to assessment, you have to do a parenting course. For ASD, you don’t have to do the workshop and parenting course, as far as I’m aware, but it’s a different pathway and a different waiting list again. You should still be offered courses to help you learn techniques.

School can put in support without diagnosis. They can do a one page profile to start with, if your son is struggling with anything. My DS masks at school, but the support there has made a big difference at home because he no longer regularly explodes. He also feels more validated because he knows people understand he may appear fine, but some things are harder.

What you want to avoid is getting to a crisis point before seeking help, because it’s just not possible to seek it fast enough and can be so awful for the child going through it. Teachers may be experienced, but they aren’t Paediatric psychiatrists. You see his behaviours at home and they see his behaviours at school. If he masks, then they may not see much that is suggestive of an issue. I wish I’d pushed for help earlier, but I allowed myself to be reassured by a teacher that my DS didn’t show signs (not their fault, they just weren’t able to see through the masking). Since then, I’ve learnt a lot more and the school has ended up being very supportive.

My DH and I are both ND. We also have family members who are. My DD is too young to tell for any HF or mild-moderate ADHD diagnosis (2y), she has little quirks that I’d mention in the paperwork should anything become more obvious later, but equally it’s fully possible she’s just 2yo and every toddler has quirks. However, by school age, if there’s any sign it’s possible, I’ll be getting her on the list asap because of waiting times.

Editing to add: Heritability of ADHD is 80%, so if you have it, there’s a strong chance your children might inherit it too. ASD can also have similar heritability, if not slightly higher.

As a student I lived with quite a few med students and junior doctors. It is a really tough course and job. The hours are unsociable and working conditions hard and there's a lot of competitive behaviour and it requires a high level of social ability.

I just don't understand how a person who can do all of that could be regarded as disabled. It takes such a high level of well rounded ability.

I can see within academic departments the absent minded professor types that so are totally focused on their very specific subject, don't need to do much socialising and rely heavily on a secretary or a wife to run the rest of their lives for them. But I don't see how it's possible to be like that as a doctor.

The type of autism that the preschool teacher is talking about is new to me. I got v upset and said I was so worried about him never being independent and she said oh of course he would be independent.

I know someone with autistic children, they are older but require the level of care that a toddler does and never ever will have proper speech or the ability to have a job or live alone. That's what I have always understood to be autism.....

I'm 53 and diagnosed autistic with ADHD. I work full time and have done all my working life apart from periods raising 4 children. I don't have learning disabilities, but learning differences.

Get rid of the high functioning bit. That's a real misnomer as we function until we don't. It's called masking. There's also no such thing as slightly on the spectrum; you either are or you're not.

With your son, I'd watch and wait, as he sounds pretty typical for a 4 year old boy right now.

@Mumof3onetwothree have you ever met people who are bright, but leave all of their planning till the last minute? Pupils who are distracted and fidgety in class, then ace their exams? Or conversely people who are articulate and confident in discussions but can't plan and write an essay? What about people who are brilliant at parts of their job, but are seemingly incapable of attending the right meetings on the right day?

All of those people could be neurodivergent. Many people are and cope day-to-day to a greater or lesser extent. Some sadly, don't cope at all. But please don't ever suggest that being neurodivergent inherently prevents people from being successful. Ironically many very successful people will have ADHD and it's the reason they keep pushing when others give up.

As other posters have alluded to burnout is a real thing. It's sadly desperately common for bright children to do well in primary, any quirks are overlooked because there can't possibly be anything wrong with the child at the top of the class. Or maybe they just need to try harder, after all they're not stupid...

Then they get to secondary, or uni, or perhaps their first job. And suddenly they can't cope with the additional functions required. And everyone wonders why such a bright person has failed to live up to their potential.

Don't let this happen to your child.

I am i Ireland and have 4 children - one has autism.

All 4 at times had the issues you describe with your child. I think they sound like quite standard issues for many children. As they grew, those issues went away - and new issues arrived.

My son has what used to be described as aspergers- it is not immediately obvious to people who meet him but had significant impacts on his ability to manage in school. He is very capable academically but without the help of an SNA he could not manage the schoolday.

If your son is managing well enough now in school etc and so many professionals you have approached are not concerned - then I highly recommend you forget about this for now. If things change and another teacher raises concerns and he is in need of support, then there would be reason to seek a diagnosis.

Are you prone to worrying about things? I can get quite anxious and wasted time when my son was suspected of having autism over-analysing his behaviour and worrying about his future.

For my son, the trips to the sensory room were vital. He could get through the day well regulated and not explode in a rage when he got overwhelmed. This was better for him, the other children and the teacher.

You don’t know for sure what is going on with the children at your school who do have a diagnosis. Don't be too quick to judge.

Thank you....it came out of the blue for me from the preschool teacher....and then a family member has constantly been hinting that there is something up with him. They are in their late teens and def not qualified in any way but they seems to have lots of friends with diagnosises and seem to be actively 'looking' for signs in my children.
So that does stress me out.
I am not trying to judge the other parents I believe they want to do the best for their children but the way they talk makes me skeptical about private diagnosises and it makes me feel I wouldn't trust a diagnosis from a private clinic....none of their children have SNAs. The HSE OT said it's a roll of the dice whether a child gets a diagnosis via the assessment of need process ...she said depends on whether the psychologist is more old fashioned or newer.

Maybe it would help to redirect your thoughts away from diagnosis and disability. I am neurodivergent and always knew I was different, just not what or how. Having an understanding of my brain type meant I could find others in a similar position and understand I wasn't built wrong. It turns out there are lots of us who can't tell left from right, trip over thin air and immediately can't remember things people tell us because of working memory problems!

Having an understanding of the type of brain my children have means I can use the techniques and support that work best them, even though they are counter to what most parenting advice will tell you. Why don't you get him on a waiting list for one of the well known places, if you have the money,l. You can always cancel later if it turns out to be that he is developing the skills later than others his age.

just so you know a child can have significant needs but not necessarily have an SNA. They might appear ‘normal’ to you but there can be issues going on that you are not aware of. They might have got a diagnosis privately but it is more likely than not genuine. My nephew also has autism but masks very well in public but has extreme anxiety and his behaviour at home can be extreme. He is parented the same as his brothers and sisters.

I think you should be listening to the professionals- not the opinion of your teenage relative.

I’ve been reading about these things for years. The conclusion I’ve come to is that it’s all human theory with no scientific basis. Your diagnosis may vary.

The history of the DSM is shocking. The decision making as to what was included was akin to a room of white western men with Very Important Career reputations arguing over what takeaway to get.

I would avoid private diagnosis for now and just wait OP. ASD that would have previously been diagnosed as Aspergers tends to become a lot more obvious as they get older and the gap widens and behaviour can't be put down to their young age. The emotional immaturity and gap in social skills suddenly becomes much more obvious once they hit 10/11.

I wouldn't say there is a huge amount to suggest Aspergers from what you've said - but drooling until school age was definitely a sign of dyspraxia in mine (who got a dyspraxia/Aspergers NHS diagnosis at 10). It wouldn't surprise me at all if the pre-school teacher was spot on. Teachers are generally very poor at picking up on SN and reluctant to say anything to parents unless they are causing huge problems with behaviour IME - so it's great that she brought it up.

As yours gets older you might see scrawly hand writing, awkward use of knife and fork, difficulty with shoe laces, bike riding where every now and then they just fall over and just general clumsiness if they are dyspraxic. There's often an overlap between ND conditions so they could be dyspraxic with autistic traits for example.

If not before, then by secondary age it will all be clearer and you can then be more confident in getting the correct diagnosis.

So far this is what the professionals have said and it's confusing:

Preschool teacher - probably yes

Primary school classroom teacher - definitely not (principal says she is swamped with reports from preschool teachers about incoming junior infants and she just files them and her and the classroom teacher make up their own minds. There is an autism class in the school so they do have experience). Or do they just not want to have to provide resourcing to yet another child?

HSE speech therapist - probably yes due to pre school teachers report but didn't observe anything significant during an hour and a half long session

GP - don't go the private route stick with HSE assessment of need process. Don't label the child because people then treat them differently.

HSE OT - doesn't think so and says there is huge over diagnosis

HSE paediatric physio - doesn't think so agrees with over diagnosis

HSE assessment of need staff member - won't assess based on the reports we sent

Private ASD clinic after screening call - needs full assessment and likely yes does have something and it's important to get the diagnosis to get supports in school.

the way they talk makes me skeptical about private diagnosises and it makes me feel I wouldn't trust a diagnosis from a private clinic....

I'm not sure what the standard in ROI is, In the UK you would need to find a clinic that meets NICE guidelines and adheres to DSM V criteria.

There are definitely dodgy clinics out there where people pay for diagnosis, but there are also many excellent services, often with staff who also work for the NHS and so there is an alignment of standards. If you go down this route I would recommend choosing a provider that uses a multi-disciplinary team to do the assessments.

People often trot out the myth that private assessments are not valid and are not accepted by schools and the NHS. This is bollocks. It is true that some organisations will try not to accept private diagnosis, but they are on very dodgy ground with the equality act if they block access to any support or treatment, especially if the assessment has been thorough and completed to a consistent standard.

You sound like you have education professionals with quite fixed ideas of what ADHD and ASD look like, but in truth it isn't a textbook condition. My personal advice if you are going to watch and wait, would be to keep in mind whether your DC's symptoms are worse or occur more frequently than in their peers. If you think they are, you are probably right and I would suggest pursuing a diagnosis.