The Brain Charity

You were diagnosed with autism or ADHD in midlife or later, and you decided to tell your manager. It went better than you expected. Within a fortnight, there was a form, a desk moved away from the corridor, a set of noise-cancelling headphones and a referral to Access to Work somewhere in the system. Everybody was kind about it.

Six weeks later you are doing your job worse than you did before you told anyone and you can’t explain why.

This is one of the most common things people say to me about the year after a late diagnosis of autism, ADHD or both. Almost no one is warned about it beforehand, so most people assume it means something bad about them. It doesn’t.

The adjustments get sorted and something else starts

A diagnosis this late doesn’t arrive as new information about your concentration or about why noise wears you out. It actually arrives as a rewrite of your entire history.

The appraisal where you were called inconsistent. The promotion you talked yourself out of applying for. The job you left after eighteen months without ever being able to say what had gone wrong.

The friendship that ended and you never understood why. All of it comes back out and gets read again against a new explanation. That re-reading happens in the background of every meeting you sit in.

It is an enormous piece of work. You are doing it at your desk, in public, while also doing the thing you are paid for. It is not on any plan, nobody has given you time for it and there is no adjustment form with a box for it.

Why you go backwards for a while

Two things usually happen at once. The rewrite is exhausting and it uses capacity you used to spend on work. And a lot of people stop masking to some degree once they have a name for it, often without deciding to. The performance you were putting on was costing you a great deal and it was also holding things together at work, so when it drops colleagues sometimes notice a difference before you do.

If nobody tells you this is normal, you’ll reach for the worst available explanation, which is that the diagnosis has made you worse, or that you were always the problem and now there is paperwork to prove it.

You haven’t made yourself worse by finding out. The information is new. Everything it explains has been there the whole time, and you were managing all of it without knowing what it was, which is harder than what you are doing now.

Why you cannot answer “What do you need?”

Somebody will ask you this in the first fortnight, and they will mean it kindly, but most people can’t answer it. You are being asked to specify the working conditions of a person you yourself have only just met. Be mindful of what else is arriving in the same few weeks.

If a review or a restructure is coming, it’s worth deciding whether you want the disclosure conversation before it or after it. There is no right answer, and you know your own workplace. If it is already underway and you are struggling, you’re allowed to say that the two things have collided. That is far easier to say while it is happening than to explain afterwards.

You’re also allowed to say you don’t know yet. “Can I come back to you on that in a month?” is a complete answer and a more honest one than picking something you once heard somebody else ask for. Ask for a date in the diary to revisit it, because the useful conversation is almost always the second one.

What helps

Decide who knows and let yourself change your mind. Plenty of people tell everyone in week one out of relief and wish they hadn’t. You can share more later and pulling it back is much harder.

The rewrite will carry on at your desk whether you want it to or not. What helps is having somewhere else for it to go as well. Whether that’s someone who has been through it and recognises every word, a counsellor if you can get one or a notebook at eleven at night. That won’t make it any smaller, but it does stop work being the only place it is happening.

If you are watching someone go through this

Partners and family often find this stage confusing. Somebody has finally got the answer they chased for years and they seem less able to cope than before it arrived. Nothing has gone wrong. Getting an answer this late means going back over everything that came before it, and that takes time and it hurts. The most useful thing you can do is not require them to be pleased about it yet.

It doesn’t stay like this

Some people come through this and stay in the job. Some look hard at work that has been costing them more than they realised, and leave. Both can be right and neither is a sign that somebody handled their diagnosis badly.

The difficult months are a stage rather than a new baseline. The rewrite does finish. At some point your own history stops being something you are actively arguing with and becomes what happened. You will still be autistic, ADHD or both. What changes is that the re-reading stops running in the background, and you get that energy back.

To learn more about the writer of this piece, Jenny Lucas, head here: Audhdistically Me | Support after a late autism and ADHD diagnosis