Second opinion

This is a very old post,  but I thought I’d log on and update you.

My daughter is now 17 yrs old, and because we couldn’t get a second opinion all those years ago, we decided to pay privately. The process took place over a few months, and was extremely thorough, yet very relaxed. We had an initial telephone assessment to see if the ASD assessment was actually required. My daughter attended several appointments for questionnaires, IQ tests, dexterity tests and more,  and an in depth evaluation with the psychologist. Lastly, we had a lengthy meeting regarding her childhood starting from my pregnancy.

We provided reports we’d made, and pages and pages of examples, and sent off emails any time we remembered something new!

We were told she meets above the threshold for an ASD diagnosis, and he’s now setting about writing up the report, and discrediting the one received from the NHS assessment.

We’re still awaiting results for the ADD assessment we booked at the same time.

Hello,

Your daughter may be interested in the web site, FIGS - Fighting Inequality for Girls on the Spectrum.

https://figsuk.org/  Twitter: https://figsuk.org/%23girlscanbeautistictoo

I suggest you ask your GP for a second assessment. All the best, Graham.

So sorry to hear your daughter didn't get the right support - it sounds like the assessors weren't very helpful. There seem to be some really useful comments here, so I hope it all gets sorted and your daughter gets the support she needs.

Thanks. She has all of the above and more!  To be fair, I wrote a 5 page report of things she does, says, etc...and gave it to the people assessing her so they could get a sense of how she is day to day.

On the report they said her hand tapping and ‘drummers’ legs were down to her being anxious. However, she does these things at home all the time when she’s relaxed or doing something pleasant....

Im aware she doesn’t need the diagnosis to get help, but I feel she needs to hear it, to help make sense of why she’s like she is, and why she’s so different from her peers and other people. She keeps saying she feel ‘stupid’ because no one can see the real her, since she struggles with simple things, yet in reality, she’s very bright...more so than than the high achievers in her year.

Maybe your daughter could find some comfort and/or advice from watching some people on the spectrum talk about it.

If she enjoys being on YouTube, there is a channel called "The Aspie World", for example. There's also "invisible i", "Anna Moomin" and "Anja Melissa", and others who share their perspectives.

Please go through the questions with her to provide you observational examples of things:-

hyperfocus, specialisms, taking things literally, strong/weak senses (Smell, Touch, Taste, etc), twitches (I have air drummer legs), scripted replies, etc.

Some things having more than one answer, depending on how the question wording is written.

Please note that under the Equality Act 2010, you do not need a diagnosis but it may help.  

if you get the diagnosis that would strengthen your daughters case.  

Thank you for your reply. My daughter is 15. I guess we started the journey at age 11. She was having sessions with the school nurse at that point, who thought she was OK, maybe a bit stressed! She was self harming and anxious.... we were referred for assessment at age 14. We had 2 meetings over the course of a year, and this is the result....!

I will keep fighting my daughters corner until someone sees sense. She can’t go on how things are, and I can’t sit back and watch her go on a downward spiral. Her life is unbearable, and so is watching her try and live it.

Good luck with your journey. Too many females are getting missed in the diagnostic process. I myself am likely on the spectrum. (Lots of family history too). I didn’t need to fill out the questionnaires to find this out about myself, but they helped me make more sense of things. I do not want to be assessed until my daughter has a diagnosis.

Thank you. I will get my daughter to fill out those form before we go to the GP today and hope it will help them make a decision regarding a second opinion.

I'm 28, female, and I'm at the first steps of getting a possible diagnosis.

I'm bringing these to the next session:

• AQ (shows I'm probably on the spectrum)
• EQ (shows I have "too much empathy")
• RAADS-R (shows I'm probably on the spectrum)
• Samantha Crafts non-official checklist for females with Asperger (I agree with over 80% which would put me on the spectrum)

I'll also refer to the YouTube video "Tony Attwood - Aspergers in Girls (Asperger Syndrome)".

And I'll bring the article "It all made sense when we found out we were autistic" that I found on BBC and "The cost of camouflaging autism" that I found on spectrumnews.org. I'll also bring some studies I found about being misdiagnosed with borderline when you actually are on the spectrum.

I was diagnosed with depression and borderline personality disorder.

I'm not sure how much my therapist knows about autism, I really have no idea, but he is young so maybe he is better educated about autism in females, but based on what I have read, I want to be prepared. We don't need to know how to build an engine or be fascinated by trains. I have also at times had a good social life, and taken parts in activities and had relationships.

I am sad to hear your daughter is feeling so bad. I hope you get the help and answers you need. How old is your daughter?

If, like me, the local NHS assessment came back like this then:-

1.  You can challenge it as well as possibly getting AQ (https://en.wikipedia.org/wiki/Autism-spectrum_quotient)/EQ (https://en.wikipedia.org/wiki/Empathy_quotient) questionnaire results first.

2.  Get an independent (self funded) assessment.

Depending on where you are, your local NHS Autism site may have recommended private assessors buried somewhere on their site or use Google and use qualified assessors (word of mouth).