Saturday, March 16, 2019

I’m 34 and live in England with my husband and 4 children.

My biggest accomplishment thus far: I’d say managing to get a 2:1 in my degree at the age of 31 whilst also being a mum of 3 at the time, 2 of my children were having tough times during this period too due to their autism.

I wish others knew that autism is not always a negative, there are good points too. These are different for every autistic person too just as neurotypical people have different talents. Also I wish they would understand that just because we don’t always reply to something they say verbally it doesn’t mean we are ignorant rude or unappreciative it’s just that there’s so much going on in our brains processing what you said that there’s little space left in there to think up a verbal reply too!

I haven’t had any help from anything formally but something I do find helpful is to read the blogs of other autistic people as it’s reassuring that I’m not alone.

I want others who are autistic to know Is don’t be ashamed! Autism is part of who you are but it isn’t the whole you. Though it’s perhaps a strong aspect of who you are it doesn’t mean that you can’t do something, it doesn’t make you not capable at all, you just might need to make adjustments along the way to your goals to help you reach them.

I am still on a waiting list for assessment I have been on the list for 13 months now with no sign of an appointment yet! If & when I recieve a diagnosis I’m very interested to see how this makes me feel. Either I will feel relieved as it would explain a lot of things that have happened in my life or even though I’m expecting it perhaps it will be a bit of a shock if it becomes official.

Signs that I suspect that I have autism are
• Overwhelming anxiety when leaving the house, especially going somewhere I haven’t been before or don’t go often.
• It’s not a lack of confidence I’d more describe it as a lack of knowing how to be with people or what to say to them. It’s like those skills are just not there or not developed as well as neurotypical peoples.
• I didn’t know why I did it until I recently understood what it was but stimming. I like to tap my fingers/foot in certain patterns or look at the lights on the celling in the kitchen and draw imaginary lines between them to make patterns. Sounds off I know but I’ve done it since being a child.
• If I need to talk to someone e.g. the doctor at a GP appointment or call the electricity company to ask why the bill is going or anything like that, I plan what I need to say over and over in my head.
• I much prefer to spend time alone than with other people. I feel exhausted when I’ve had to be around people for any length of time. I have found it difficult to hold down a job due to this as it’s physically and mentally draining.
• I feel I have tried to mask autism for such a long time now (without really realising) that I’ve lost sight of who I really am.

The things I listed above and the fact that it seems quite clear that most of my Dad’s side of the family (including my own children some of whom are diagnosed) have very strong autistic traits.

I was diagnosed til much later because
I was labeled as shy and told I needed to become more confident. I was quite bright academically and always followed rules and didn’t show any negative behaviour at all. So as I didn’t pose a problem to anyone it was never picked up on. I think the fact I was at school 20+ years ago has a lot to do with it, there wasn’t the understanding around autism that there is today.

Barriers getting a diagnosed as an adult:
I asked the GP to refer me to assessment and he said “I don’t see the point as you’re now an adult and you’re got this far in life OK so I don’t see the value in it” I insisted a bit and he asked another GP and they agreed to make the referral thankfully. As I mentioned I’m still waiting 13 month later for an assessment. I took my daughter aged 13 to the GP to ask for a referral for assessment for her and he told me she didn’t seem to be autistic just shy and maybe a bit anxious after seeing her for 2 minutes! He refused to refer her and said she should see a school councillor instead, so basically did nothing to help. Very frustrating and upsetting.

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