What if he doesn't get a diagnosis?

[cornflakesandtea]

DS is in y6 and will be off to senior school next September. He has been accepted for referral and is currently awaiting assessment for ADHD / autism. I've known for a long time that he struggles more than his peers and I've always felt that there is something more to him than the "naughty boy" that people sometimes see. Since he has grown older he has got better at holding his emotions in but it's still an issue, at home but more so at school.

It's taken a long time for people to take me seriously when I've asked for answers regarding potential ADHD / autism. I finally got some people to see what I saw. I thought the hard part was done in getting the referral. A diagnosis won't change who he is and how we behave around him, but will hopefully offer support which he currently gets in junior school even without a diagnosis, but may not follow through to seniors if he doesn't have anything concrete to say yes, he has x, y, z.

We've had a letter today to say his appointment for his QB test is in a few weeks and it's got me anxious. He did a QB at school and it only came up a "moderate" chance of him having ADHD, so now all I can think of is that whoever assesses him will only see his masking and not how he is at other times. He's mostly a bright, articulate, curious boy and would talk the hind leg off a donkey, but at other times he's angry, sullen, and reactive when faced with challenges. I'm worried we will go into any appointments and they will laugh at us. Why is this child here? He is clearly fine, his behaviour is normal, and mum just can't deal with it.

He needs the support he is given at school, and I'm so worried that if they do tell us that he is NT that all the support will fizzle away and he (and we as a family) will be left struggling. What do I do if we get through the assessment just to be faced with a "no, he's fine"?

There may be good and bad news here OP?

To make it through to assessment, and to have significant adjustments made at primary school, suggests that the existence of DC's additional needs is established, and that it's a matter of understanding their origins? So your, 'he's normal, mum can't deal with it', scenario sounds unlikely, irrespective of whether DC receives a neurodiverse diagnosis. That's the good news.

The less good news is that even with a diagnosis, Y7 often becomes year zero, and you may find you are arguing from scratch about the need for adjustments/provision, and may encounter 'fine in school' narratives even with diagnoses.

I guess a diagnosis enables one to develop a more detailed understanding of possible needs, and refine a view of strategies to try, and ultimately to structure the case for SEND provision. But most of us are left to battlethis out with schools and LAs on our own. (Which is why these boards and the knowledge exchange that takes place on them is such a lifeline).

I hope the assessment goes OK, and you get some answers that help you move forward.

Competent professionals will see masking for what it is.

Support in schools is based on needs. A diagnosis won’t automatically result in support, and not having a diagnosis doesn’t mean the school can get away with not providing support. The school must make their best endeavours to meet a pupil’s SEN diagnosis or not.

I am coming from this from the very early stages of diagnosis (DS aged 10 has the assessment next month) after a year of wondering what is wrong and the fact that he is the normal shy kid that flys under the radar at school but at home his behaviour is occasionally off the scale with meltdowns, rages, sensory issues, very controlling, verbal and physical abuse of sibling and parents. School do not recognise the child I describe at home because he is a model behaviour student (albeit not great academically). They didn't want to be involved because it was just a home thing.

However, a 'traumatic event' happened and we moved house locally. A process that he was involved with from the start but the buying timescales dragged on endlessly and his anxiety rose to a really dangerous level.

Directly after we moved he started refusing to go to school. The mask slipped outside home and he was up front at not liking his new teacher, not liking certain lessons that meant he had to contribute in class etc .. then school really took notice and had to make adjustments.

I spoke to a psychologist recently who said that a traumatic event such as the covid lockdowns, house move, death in family, move to secondary school are undoubtedly hard on everyone but for someone who is ND and is very good at masking and copying others in terms of acceptable behaviour, the effect is like opening Pandora's box which cannot be closed again. A lot of kids don't get diagnosed until they start secondary school because primary is a nurturing environment where they are comfortable masking and some adjustments become quite normal across the board. However, they struggle to do this in a new bigger and busier environment. It's too much to take in.

I too I'm worried that he will not be diagnosed and I have been encouraged by the psychology team to keep a diary or notes of examples of home behaviour and detailing scenarios in writing. I now have a file on my phone and take notes every few days. I have also been going through past concerns and memories and jotting them down. The horrendous toddler tantrums well into 4 years old was it a sign of something else?

His behaviour is not like this all the time and I always make sure I say that. He is a delightful, funny, caring and engaging boy but at least once a day something triggers him into a bit of a monster.

Will you get to talk to the psychology team as well as DS doing the test? Keep a record of home behaviour so you can give them a full picture of the situation. The fact that he needs adjustments at school speaks volumes. How could he cope if he didn't have them?