Published on 12, July, 2020
Our daughter Sarah age 27 has struggled throughout her life. Her milestones were late and speech was slow, she went through mainstream school with SEN assistance. Even at an early age when dyspraxia was mentioned our doctor told us not to have her statemented as this would label her for life. Which looking back on it in our opinion was a serious mistake because she now falls below everybody’s radar.After school she then went onto college, studied for an Ntec in catering and passed. Up to this point there was no mention of autism.After this point any assistance we had ceased.Sarah has managed to obtain and maintain work since leaving college, holding down two jobs - working for National Trust *** for one day a week and then *** in the catering dept doing a 4 day on/off shift.It took her a long time but Sarah has managed to learn to drive so is mobile which has helped her maintain her independence and travelling to work.Sarah has also been living independently in her own home (with a lot of help from us her parents) for the past twelve months.Where Sarah struggles is with social norms and interaction with people. She has few friends (if any) that she can call on to go out with and it is the loneliness that she is really struggling with. Having said that she does (where shifts allow) help out with the local guiding movement and also attends various groups.. Whilst these do help they don’t provide her with the “friends” that she craves. She has told us that if she is invited to works do’s that she inevitably sits on her own with little interaction with her colleagues. She also informed that none of her work colleagues contact her out of hours. She was asked however not to contact them as she “was making a nuisance of herself and didn’t know when to end contact”.After watching the Christine McGuinness programme on TV we as parents and Sarah independently had a lightbulb moment and she said ‘that’s me’. Sarah has been to the doctors and has been referred for an autism assessment/diagnosis but has been told that this could take a further 2-3 years (we are now about 10 months in).I would imagine that this waiting time is not helping with her mental health and we as parents did not know where to go.What we need to know is if a private assessment was to be done would it open up more doors for her and earlier?Any help would be appreciated.
[edited by moderator]
Thank you for your response. We will take a look at the right to choose via NHS.
Thank you, yes we are a strong family unit but our concern is what would happen to her if we were not around. I will point her in the direction of the site.
Thank you, I will talk to her about the forum
I am lucky in that I pay into a private scheme for healthcare at work, so can use that and only pay a percentage myself of each claim. so used that when I hit rock bottom and ended up with my diagnosis.
It's quicker, a few months end to end. It's pricey, the invoice I saw was over 2k. I assume there will be payment options with some that might offer credit etc.
I think there's also the right one o chose via NHS, worth looking into.
Hope you get on ok and find her the help she needs, it's good that you've seen a light at the end of the tunnel in terms of recognising what it is she may be struggling with. You can probably do a lot without a diagnosis in terms of finding out more about autism and how you can adjust for it. Obviously it's much easier if you have a diagnosis to know if exactly what you're dealing with , as autism presents itself differently in most cases with some similar but other different traits from person to person.
You'll always get good advice on here and its somewhere to ask those seemingly daft questions we all have.
All the best!
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It sounds like, all said and done that you're a strong family coping well with struggles. NHS Autism assessments do take years and don't always result in a diagnosis for women especially those who appear to be coping in society. Perhaps it'd be an idea for Sarah to join local interest groups for Autistic adults who are self diagnosed until her assessment happens? Perhaps she may form friendships there? Perhaps this site may have helpful information if you haven't already researched it: https://autisticgirlsnetwork.org/
NAS94675 said:What we need to know is if a private assessment was to be done would it open up more doors for her and earlier?
Now she is an adult in employment then the returns are much less than if she were still at school, but it would give her the right to asks for something called "reasonable adjustments" from here employer to tailor her working environment to better accommodate her autistic sensitivities (eg to wear headphones in loud places, have different lighting at a desk etc)
Not a lot that would suit her jobs though.
It can be expensive going private (Ive seen £500-2,000 quoted) so unless she has sensitivites at work that would benefit greatly then it may not be good value.
NAS94675 said:Where Sarah struggles is with social norms and interaction with people.
She is clearly intelligent so may be able to understand the social "rules" and accommodate these into her interactions with others to be able to hide better in plain sight. She will always have to work harder to fit in and is likely to need breaks but if it is what she really wants then the following books can help:
The Unwritten Rules of Social Relationships - Decoding Social Mysteries Through the Unique Perspectives of Autism - Temple Grandin, Sean Barron (2005)ISBN: 9781941765388
An Aspie's Guide to Making and Keeping Friends - Attwood, Tony, Evans, Craig R., Lesko, Anita (2015)eISBN 9781784501259
It would probably be more helpful for her to be pointed to this forum to ask her own questions from her perspective - and to find a community who understand her.