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ASD Assessment Jan '23- getting cold feet terrified of repercussions

NAS69638

Hi everyone

I've not posted before but have been a lurker on the site for a couple of years now...

I have for a few years now strongly suspected that I am somewhere on spectrum due to many of my 'quirks' ticking lots of ASD boxes. I recently decided that I would like to definitively find out by seeking a formal diagnosis. The purpose is really for a bit closure for myself, to have a better understanding of myself past, present and future. 

As the waiting times for assessment is so long, I contacted a private assessor and had the initial consultation with a psychologist who found that I had many markers for ASD and recommended me for the formal assessment. I booked a diagnostic assessment for January 2023.

HOWEVER, I am now terrified that I am making a terrible mistake. I have a daughter and am worried that if the assessment is affirmative of ASD it will open a pandora's box. For example, when the GP receives the report, what are they obliged to do? Do social services get involved? Will they think that my parenting needs assessing?

A reason why I'm so worried is that I have had a terrible time with my ex and father of my child. A few years ago I had to contact SS because there was a question mark about HIS parenting following some comments my daughter made when she came back from staying with him. I was a long, drawn out nightmare and he blamed me for everything, said I was mad etc. I'm really worried that if he finds out my ASD then he will use it against me. I'm now really thinking of not going ahead with the assessment. For clarity, when SS were involved and investigating my ex, they found nothing wrong with my parenting and this was also confirmed by the school who found me to be protective, no safeguarding issues raised etc. I just don't know if I'm being paranoid and overthinking everything. 

So essentially, I was wondering what other people's experience was post diagnosis with GP if you are a parent. Did the GP contact you? Do they automatically refer you to some sort of service or SS for example? Do they question your ability to parent effectively?

  • Don't worry, you are definitely (if understandably) fretting needlessly. All you get after assessment is a list of organisations (few of them targeted at adults, most for parents with autistic children) that can help/advocated should YOU confidentially reach out to them. Your assessment  outcome will remain an entirely private matter between you, your GP, and the assessors, unless and until you let anyone else know who you trust. I'd urge you not to cancel. I had a January assessment too (this year) and knowing what's what has helped a lot with internal re-framing of stuff, even though it doesn't magic away life's challenges. I wish you well with it, and please try not to worry or conjur up these improbable (impossible I think) situations around custody etc. Maybe easy for me to say as a non-parent, but it also gives me enough distance to look at it factually rather than from a place of triggered paranoia. Sounds like things have been rough, and paranoid thoughts can take hold so easily when you're vulnerable to them. Been there myself, in another context, and it's frightening to look back on how fevered my imaginings got. 

  • I haven't had the diagnosis yet, but what I can say is that SS are so heavily overstretched already, they are not going to go looking for more work for themselves.  They've got their hands full looking after the children who already need it.

    And also there is no reason that your ex would find out about your diagnosis- it's confidential medical information and you choose how to share it.

    Usually, I believe, the NHS just says, "ah-ha, you are autistic.  You need some support."  And then proceeds to do absolutely nothing because there is no funding for it.  It's basically just a tool that you can use to manage your own life, ask for accommodations at works if you need them, etc.