To go for a diagnosis for my child or not?

How do you know it was the right thing to do? So you don’t believe your son is ND? Or you do but chose not to pursue an assessment? @Hopeyoudontspotme

What would you have lost by going for an assessment if it was suspected?

I’m in education.

chose not to go for a diagnosis for my son

it was right for us.

Is she clearly impaired by the traits you mention?

The traits of adhd and asd overlap a lot with normal variation in humans, the distinguishing feature is the extent to which you are impaired by (for eg) social deficits or sensory needs.

How does she get on at school? How is her behaviour at home?

Its normal for teenagers to have mood swings or be quite "blue" a lot of the time.

We actually have a long relationship with the assessment centre where my child also received therapy. The therapists know my child well and they supported an ADHD assessment. (I don’t believe they would have been pressured by their centre to do so.) Our school otoh didn’t see signs of child adhd, and their opposing questionnaire was the reason we had an inconclusive result. If I had understood ahead of time that the child needs to meet the criteria both at home and at school (or another site) then I would have told the assessor and perhaps we would have waited.

We also went through the triage system with the NHS and we’re on the ADHD waiting list too.

My son has adhd and is autistic. He refused assessment for several years until he started his gcses then agreed. When he got the diagnosis he was sad for a while and doesnt like to feel hes defined by it. However, he feels it was right to do it now as he is at uni and has a lot of adjustments made for him which he may not have got without the diagnosis, and he acknowledges he would not have been able to cope without them.

I asked my (private) psychiatrist about this When somebody asks for an assessment, she sends them gazilions of screeners and other questionnaires. She looks at them and if she thinks she might not be able to diagnose them, she cancels their appointment. The NHS (at least in my area) has a triage system like this.

My friend didn’t tell me what adjustments the school made but since her DS has slow language processing, I’m assuming they might have given him written materials in advance. He is also a perfectionist and worries a lot about getting things wrong so maybe they did something like allowing him to come and talk through his homework before handing it in.

I wholeheartedly agree with you about the spiky profile. I apparently was the best student ever in foreign languages and maths (at a grammar school) but it was touch and go about whether I would even pass English Literature O-level (I’m autistic and have ADHD AND can’t read between the lines of understand inferred meanings.

ND traits can definitely change with age. I don’t know why but some of my ND traits have recently (I’m late 50s) become much more pronounced. I am now having regular autistic shutdowns and my language processing has become so bad that I now cannot understand American films or TV programmes, even though I used to live in the
USA and went on many business trips there to work in our US offices.

Also, it really riles me when non medical people use the word ‘label’ instead of ‘diagnosis’. It often sounds very dismissive even though it is incredibly significant and negatively affects every aspect of life - physical and mental health, relationships, career, education etc etc. I’ve never heard anyone describing a diabetes diagnosis as a label. This term seems to be reserved for ND diagnoses.

i would also go for a diagnosis but it’s up to your DD.

I was just chatting to my young adult DC about this - they are ND but haven’t yet pursued a full diagnosis (got a working diagnosis for DSA at uni).

They brought up that when they were 11 (so 12 years ago) we both thought someone who had autism would be non-verbal or have severe learning difficulties, not have friends etc, but that is def not the case (they did struggle w friends at school but always had a couple). Weirdly enough I saw more traits in my other DC as a child but as they were so popular in nursery and infants I thought they couldn’t be on the spectrum. I then worked in an environment with autistic children and that cemented my view that DC couldn’t be as these kids had so many difficulties - couldn’t be in mainstream school. DC are very bright - had no learning issues apart from struggling w concentration.

Both have moderate to severe anxiety (diagnosed) probably because they’ve masked/struggled all their lives. Now they’re adults it’s up to them to go through the process of diagnosis.

Your DD may benefit from a diagnosis if she intends to go to uni/apprenticeship etc. as accommodations can be put in place.

What sort of help did he get at school? Interested in what helped @dizzydizzydizzy.

I also think these conditions can become more obvious as a child gets older. And as a parent it helps it you have more than one child (for developmental comparison reasons) so it might take longer to notice a developmental delay or difference if a child is the eldest or an only child. That’s why teachers can spot it more easily, they know what is typical. The problem is they often don’t say and wait for parents to come to them. This has been my experience at least.

We were told by an educational psychologist who was assessing DS’s learning that it would be a good idea to pursue an autism assessment as people make their own labels anyway and autistic is far better than being thought odd or weird! I was a bit shocked by that at the time, but as he’s grown it’s become very obvious how different he is…he’s absolutely brilliant btw, and very loved but there are lots of issues.

OP…regarding your DD’s learning, it is very common for ND people to have ‘spiky’ profiles, so for example DS scored in the 95th percentile in some areas and in the 5th in others when assessed by the ed psych. Processing speed and working memory are often issues in ND people. DS needs a little extra time, one instruction at at time and so on, but is exceptionally bright in other ways. It varies depending on the person of course.

Both of my girls have ADHD. One has really bad sensory problems and doesn't cope with change to routine well. This is not only related to ASD as a lot of people seem to think. My eldest was diagnosed at 6 but when she was a teen, I took her regularly to the adolescent adhd clinic in my area. The doctor there said that she would become less hyper with age, almost the opposite of what she was when she was young. I remember laughing at this as the thought of it seemed absurd, but it's definitely happened.

She also said that girls with adhd in early adulthood are more prone to self esteem issues, self harm and low mood etc.

She takes medication for sleeping still (she's 21 now). They have helped although you can get melatonin online these days anyway, without a diagnosis.

Yes, behaviours seen in autism are seen in non-autistic people. The point is an autistic person has more than the the odd trait and their lives are significantly impacted by their autism. Obviously no one can diagnose on an internet forum (or in real life unless they're trained to) but there's no reason why those of us with experience can't say a description of someone's behaviour might warrant consideration of an assessment.

And again, as a late diagnosed woman, I absolutely did need my diagnosis to understand myself properly. You don't spend 40 years trying to 'fix' all the things that you perceive are 'wrong' with you and constantly failing to do so without that having an impact. Now I understand why I find some things more difficult than other people and act accordingly, rather than trying to change who I am to fit in, for example.

And with a primary aged autistic daughter who used to say she felt like the 'odd one out', but could never articulate why, her diagnosis has helped no end.

Firstly it's not a label, it's a diagnosis. I hate it when people call it a label. A diagnosis will help her throughout her adult years. You shouldn't have left it so long.

@Toornotto you are doing your daughter a great disservice. ‘I’ve always been able to manage her fine’. It’s not about you, she obviously can’t manage herself fine. She needs to understands her struggles, what they are and how to help herself. a diagnosis isn’t a heavy weight to carry around with you for the rest of your life, it’s a key that opens a door to a place where you feel validated, and where you can put your struggles in context and start to address them.

And there are no things as ‘typical autistic traits’.

It sounds like getting her assessed would be a really good idea.

This poor girl is approaching adulthood, barely able to attend college or exist in the outside world. What sort of life is facing her?

In answer to your question, say you don’t pursue a diagnosis and possibly medication… you genuinely think your daughter is heading for a happy fulfilling independent life?

I think that the easiest way to understand it is in the context of physical diagnosis.

Imagine if you had a leg which was sore, you couldn’t weight bear but it wasn’t swollen. You would go to get it checked if it was broken even though it only met 2 out of 3 diagnosis criteria. Because possibly it’s not broken, or possibly it’s broken but not swollen.

Similarly, possibly your daughter had stopped being hyper because she doesn’t have adhd. Or possibly she has adhd but has internalised the hyper so her brain is racing instead of her body. Without seeing a doctor you can’t know.

My younger DC has an adhd diagnosis, alongside quite a few autism traits. I don’t feel that he has been labelled and diagnosis has been crucial for us in helping him manage his symptoms. It has also enabled us to choose suitable therapy for him to engage with which has then in turn been transformational.

I compare him with my sister who has similar autism traits but no diagnosis and now, in adulthood, struggles to regulate her emotions, is frequently overwhelmed, finds things very daunting, has a huge amount of unmedicated anxiety. I’d love her to try some of the occupational therapy which we have done for my ds but it’s hard to think about that later in life.

You don't refer for a diagnosis, you refer for an assessment. Which may or may not lead to a diagnosis. Or may suggest other diagnoses are more likely - learning difficulties, language problems etc.

What does your daughter want OP? Do her difficulties make it hard for her to do daily things, manage education, be independant? At 17, it's really her choice now.

It’s so annoying the “not wanting to put her in a box thing”. If she is, and she sounds like she might be, diagnosis is a tool that will help her navigate life forever. You don’t deal with life struggles in the same way if you’re ND than NT people do - it’s just different, and it needs different approaches.
also, please have a look at the stats on depression on non diagnosed autistic women

There's virtually no support.

I'm having regular autistic shutdowns every time something a bit stressful happens or I experience sensory overload.

For example, there was a day when I had my daughter crying on the phone to me in the morning and in the afternoon my mum's GP phoned to say they had sent her to A&E (they sent her home late that evening because there was nothing wrong with her). The stress of this caused an autistic shutdown in me. All I could do was lie on my bed and listen to music, i couldn't cook, talk to people or eat much. This lasted a week. It keeps happening. It never used to.

I'm having to pay a private psychiatrist to help me. I've no idea where else I can get support for this. My GP very apologetically told me there was nobody she could refer me to, not even a charity.

You only get a diagnosis if your traits have been causing you significant problems since early-ish childhood and if you have enough of them.

Clinicians know how to tell the difference between normal variations between people and neurodivergence.

For example, everyone sometime has trouble with concentrating especially if they had a bad night’s sleep and are faced with a boring task. But on most days they will bell able to force themselves focus because they need to get things done. Somebody with untreated ADHD may find their mind wanders nearly all the time, except occasionally they hyperfocus so much that they forget to eat. They want to focus and they end up wasting loads of money because they forgot to return clothes that don’t fit, forget to cancel memberships etc.

it’s not altogether surprising because scientists have compared ADHD brains to neurotypical brains and found that there are differences in structure, connectivity and neurotransmitter regulation.

We're looking into getting our DD an ASD assessment. She's already been diagnosed with ADHD as that was more obvious. Her school thinks possibly ASD. I'm not sure, because when I look at screening questionnaires, she doesn't tick as enough boxes. But some of that is probably because we've accidentally built an environment that works for her. For example, we never suddenly say it's time to leave somewhere, we always give a 5 minute warning. I've had a friend ask why we do that, and we started when our oldest was little as it doesn't seem reasonable to spring things on anyone.

The other issue is that ADHD and ASD can pull in opposite directions. So the novelty seeking nature of ADHD resists the repetitive ASD behaviours. So I'm not sure if there's enough of things like repetitive behaviour for my DD to qualify.

Just so you know the waiting list is 3 years long in most areas. My dd is on it! It depends a bit on how happy she is I would say and how well she’s coping with work / study or whatever she’s doing. I have applied for diagnosis bc EVERY setting my 8yo was in was difficult for her and every adult who met her mentioned autism. I need answers.

At that age though and having coped all the through the education system thus far I’m not sure if it would help much or not really. If the adult waiting list is shorter it might make more sense to wait until she turns 18!

I understand they can mask it and seem to function, so it's sometimes only later in life it's recognised. When your DC was at school there wasn't the same awareness.

I was just talking from my own experience. DC was very ND and it was evident from a very early age, having to change schools until we found a specialised one, which they have thrived in, albeit ongoing behaviours at home.

They will need support for a very long time, which we are here to give. Xxx

Do these traits impact her functioning. Does she need additional support that only a diagnosis would give. If yes to both of these look into assmement if no don't. Not everyone with traits needs an assesment and the speed with which people jump to assessment is partly why there has been such a huge jump in referrals meaning people who actually need support can't get it.

Well I didn't realize DC2 was neurodivergent until they went to university. It is a common to not spot it until this point. Some of us are masters of hiding our traits - especially intelligent girls and women.

I was discussing this very point with a friend of mine yesterday. Her DS fell apart at uni and was sent for an autism diagnosis. His mum asked him how he managed at school (he got 3xAstar in his A Levels) and he started reeling all the help he got at school. Sbe had no jdea.

Also, ND children usually have ND parents and grandparents. So their behaviour seems normal to their families.