Published on 12, July, 2020
I have a 19 yr old daughter whom I think may have HFA. There have been many quirks to her personality over the years, but most importantly and disabling is her inability to manage social situations. She has lost all but two friends from her school and college years, she tried to start uni this year, and this resulted in one panic/meltdown when she tried to move into her student digs. We came home and she continued to insist she would go, but a week later after attempting the first day she had another almighty panic/ meltdown. We brought her home, there has been no backlash to this, no emotion, disappointment, frustration anything!!! i truly believe she does not know how to understand herself and her feelings, as there was little conversation about going away, just a build up of anxiety a few weeks before ( but this was only evident by a few panic attacks). She has been put on AD for her anxiety, she watched the Chris Packham docu, and told me two days later that she felt she connected with everything he spoke about. I did my research, and feel she has many traits and the GP asked her to complete a questionnaire.We go back to GP tomorrow, and I'm just lost as to how to pursue this? It's all very new to me, and im worried the GP may dismiss our concerns as we have never raised any issues beforehand. to be honest, I thought many of her traits were things she may just grow out of, or gain confidence once at uni??? is there anything i should be doing that i simply don't know about, anyone out there on this forum who has had a similar experience? if someone thinks we are barking up the wrong tree , please say. The GP test was a score of 40/50 autism spectrum quotient test. Thank you
MOM
Hi. I'd give you two pieces of advice.
For point 1, I went to see my GP initially, and told her why I thought I had autism, she just looked at me blankly. So instead, I found out from my county's autism provider exactly how to 'get in', and they said it's only by referral from the GP. So I wrote a 6 page document detailing why I think I have it, completed the referral form myself, then booked a second appointment with my GP and said "I think I have autism, I realise you probably don't know that much about it, but I need you to make the referral to the county provider, here's their address, and here's my evidence and my completed form, please sign it and send it off". And she just took it and said "okay", and sent it off. Make it easy for them!
thankyou, that is a great help. I've just felt helpless as the GP did give us that blank stare when it was mentioned, I will take your advice and drive this myself so that we can get an assessment done. Quirks were probably the wrong word to have used :-) you have been very determined, and I intend to take that on board.
Hmmm......interesting. i did do the test myself, i scored 15. its a starting point i guess, but there are many layers to be explored. Thanks.
That's great to hear! It's great that she has you to help her get the support she needs.
The provision for autism in adults can be quite different from that for children - as is the case for many disabilities/disorders, once you get to adulthood the NHS funding seems to disappear. Also, autism care is done by different providers in each county in the UK, so the level of support can differ. Read around the subject and discuss things with your daughter - if you're both sure she has it then stand your ground and don't accept no for an answer. For myself, I know 100% that I have it but my initial diagnosis came back "not really sure" because my mum didn't notice any quirky things from my childhood and I had friends. I was invited back for a second interview to discuss it, and I provided more evidence, did some visual/maths tests, and suggested they speak to my sister instead, before they came back with a "yes" (we had a good laugh at the things my sister remembered!). I didn't settle for a "maybe, not sure" because I know 100% that I have it. I went the extra mile because it was important to me to get the diagnosis.
When I took another family member for assessment, for which I think they present clear indications, the specialists didn't take it any further because my family member wasn't having severe difficulties at the time, which I agree with so we didn't push for it. So, my point is, if you're certain, and you think the diagnosis would help as it could unlock some support for your daughter, keep pushing until you get it.
It's okay to go for further assessment or second opinions - remember that you know your daughter better than they do, so make sure you can gather and present the evidence that would help them make their decision. This would be of the form of things she struggled with when she was little, any speech or developmental delays, friendships and social groups, routines, what would cause meltdowns or what would cause calmness. Note that whilst people with autism share many traits, we're all different and it's a spectrum condition, so some people might have had late development and few friends, and others might have had accelerated development for some things, and a circle of friends, so it might be useful to just categorise your evidence but don't worry if you have nothing for certain categories - it just means that your daughter had no obvious difficulties with that particular thing.
Hope that's useful.
Seconding Robert123 and seekeraftertruth, you might find that these curves help provide some context for your daughter's AQ score: