Autism assessment am I wasting everyone’s time?

[Karou]

DS is 14. And we have been on the waiting list for an autism assessment for about 18 months. I initially raised the possibility of neurodivergence with his school following a period of time when he was being bullied. But now, 18 months later, he appears to be getting on well and says that he has no problems. I wonder if I should just let it drop?

DS is bright. He is in a school for gifted kids and, now, very happy there.

Over the years various professionals have raised the question of neurodivergence with me e.g he was a very late talker so when we went to speech therapy the therapist would use flash cards and ask him to tell her about the picture but he would read the description and numbers at the bottom of the card and refuse to discuss the picture. At nursery he was more interested in learning to read and do maths than play with other children. In primary school he had few friends and would spend his play times on his own playing games. I always admitted that he is quirky but he is also happy, thriving in school and we don’t struggle at home at all. We manage sensory issues without too many problems, I ensure that I communicate plans and happenings outside of normal routine and we are just used to his random movements. DS does think that he isn’t neurotypical but insists that he doesn’t have any problems, just that he doesn’t fit in with everyone else.

Since the bullying incident and being referred for the assessment the school have managed DS very well. The worst thing he does in school are his random movements (it’s a bit like ticks or stimming I guess, lots of desk tapping, head nodding, arm waving, that sort of thing). He manages the school day well, does all his work on time, is polite to teachers etc.

So I guess what I’m concerned about it getting to the assessment and saying ‘no we don’t really have any issues’ and being sent home having wasted everyone’s time.

The only reason I can see to stay on the waiting list is so that the school can remain understanding about his inability to remain still.

I know that symptoms always become more difficult to control during transition periods which is why year 7 was so hard for him, he will be in this school till he finishes 6th form. Maybe we need to pursue this so that he can have help going forward to university and into work?

I was so reluctant to go down this path in the first place, now I’m worried that we are just wasting everyone’s time.

You are absolutely not wasting anyone’s time! I’m glad your child’s school have been so understanding. Having the diagnosis will mean that school will continue to give extra support when needed. Also future employers will also be aware if your child feels he needs extra support at work and needs adjustments made.

Your DS sounds lovely and I'm glad he's happy in himself and things are improving at school.

I'm a university lecturer, and if you're thinking of that as his possible pathway, my advice would be that if an ASD diagnosis is appropriate for him, it will be helpful going forward. Reading between the lines, it sounds like you are being a bit of a buffer for him at the moment - e.g. teeing up changes in plans. Obviously, some of that is appropriate at 14. But he may need him with executive function, communication, sensory issues into adulthood. While support at university is still based on needs, having a diagnosis will I think smooth the pathway to funding and support services he might need.

I would go ahead with the assessment. The possibility has been mentioned by more than one person over a long time and there was enough for a referral to be accepted. I don’t think that is wasting anyone’s time.

Thank you for your reassuring replies. @BusMumsHoliday You are right I do tend to buffer. I have an older DS with severe dyslexia and I have dyslexia myself, I am used to identifying potential triggers and mitigating for them. But as DS is hyperlexic with no anxiety I’m not personally familiar with his particular additional needs. I guess that means I don’t identify with them. He is planning on going to Uni.

We have been offered an online autism assessment as an alternative which is what has triggered todays imposter syndrome crisis. DS is happy with an online assessment so I’ll email them and set it in motion. Might reduce the wait by a month or so 😅.

We had the autism assessment on Monday, took a last minute cancellation appointment.
It went well, thanks for all your encouragement. I have a follow up interview in a few weeks to talk about his early years then we’ll find out what they think.