Autism assessment

Great news. :)

Great result, got there in the end :)

UPDATE!

We had the final report through last week - she has been given an ASD diagnosis.

They apologised for how the assessment process was done & have said that my daughter has made them realise that online assessments are not that suitable for teen girls.

They thanked me again for not giving up & making sure we were listened to. 

She's also been diagnosed with ARFID & being referred to a dietician. 

Thanks for everyone's advice & comments, it's been very helpful in what was a very stressful time. My daughter also seemed relieved when we told her the outcome & she has opened up to me a tiny bit more this week, even told me what happened at school the other day when she said she had had a bad day - this is a huge improvement as we normally just get the fallout & meltdown with no explanation! 

Thanks for everyone's advice & comments, it's been very helpful in what was a very stressful time. 

Will do. 

Thanks for the support! 

Thankyou, that's very kind of you to say. 

Great news, please let us know what happens, fingers crossed for you and your daughter :)

Fantastic! We all know it's been hard in the pandemic to have to do stuff via zoom. That probably had an impact. But I'm do glad to know the team are open minded and listened to what they might have missed by being for foced to do it that way and because girls are clever compensators.

And you are a brilliant mum btw. You fought your kid's corner and your daughter is lucky to have you !

That's great!

My assessment is done online (Healios).
I had 6 appointments online and more than 10 hours of interview.
I did very well in school, I have a lot of knowledge on many topics except those of daily life that do not interest me. I speak a lot, a lot, people find me kind, pleasant, polite.
In short, no one can see that I am autistic spraying. I was raised by a military family. Appearance is important. So I learned, in spite of myself, to create a social mask, to do like everyone else.
My second wife invited me to take an assessment. For me, it was stupid because  I was absolutely not autistic. Different but not autistic.
I didn’t have a GP, I enrolled in a local medical center and I met, as if by chance, a GP who was finishing his specialization on autism. He watched me, I spoke according to my social mask (it is natural). After 15 minutes, he told me if you’re not autistic, I’m not neuro-typical. But I thought, he must be wrong.
During the online evaluation, I said to myself: "They will tell me that I am not autistic, because I am not autistic. For 53 years I will know".
During the evaluation I met independently 3 different professionals, my wife also had interviews with them. In addition to the classic tests they did complementary tests and studied all my medical history (complex at home).
All these professionals unanimously gave their verdict, I am deeply autistic Asperger and I now really need help, even though I survived, not without a certain price, for 53 years.

I am a scientist. If you had the opinion of a professional, it would be better to have the opinion of a consortium of professionals. Otherwise, their diagnosis is certainly correct. Not all differences are systematically autistic cases. Moving to other behavioural assessments would be a possibility.

Your description fits perfectly with what my wife experienced as a child. Yet she is not autistic, but she is different, she comes from a Siberian shaman family. She has great skills. she perceives the world differently, intrigues scientists and challenges medicine. But she is absolutely not autistic.

I had a long phone call from the Autism Practitioner yesterday. 

We spoke in lots more detail about the day to day struggles & all the traits I felt they had overlooked.

She said that the virtual assessment isn't always the best option for all children, especially girls, they are realising.

And she accepted that it was a "performance" they saw. She said she thinks they put too much focus on the fact that she appeared quite sociable & said she's not too proud to admit they may have got it wrong.

She's going to go go back through all the reports & take into account everything I told her yesterday & she said she thinks there will be a different outcome.

She highly praised me for not giving up on her & being the voice she needed.

I am so grateful that we finally feel like we are being listened to & my daughter will finally get some support, but also, I feel that it shouldn't have been like this.

She is also going to refer her to a dietician & OT too.

I will give a final update when they get back in touch next week.

Thankyou to everyone for all your comments & advice & making me see that my instincts were right.

X

Also girls are very much better at hiding their Autism - Social Masking, which is why it is so important a trained Psychologist is able to observe your daughter and carry out an ADOS test. If all else fails you might have to go the Private route??

Interestingly, I thought that I was suffering from Social Anxiety but got diagnosed with Autism by a Psychiatrist and then by two Psychologists during the formal assessment (both private, Psychiatrist was a referral from my GP, cost £300 and the formal assessment was a referral from the Psychiatrist £1700).

Not all practitioners have caught up with the latest research on the non-stereotypical "male" presentation.. The current presentation can be quite subtle, albeit the signs may be stark in baby hood (mine were - but I'm sociable now), or may get worse in adolescence. But the criteria just say the traits should have been there in tolderhood, even if the person has since learned to cope or hide them.

The Lorna Wing Centre and many other private practitioners generally do a lengthier assessment where current presentation might be less obvious, just so they can dig at little issues like ones you mention and be sure one way or the other.

It does strike me as odd mind that they are saying she has "social anxiety" on the one hand, but is "sociable" on the other. I'm not a psychologist, so wouldn't like to guess at how that works out, but strikes me as odd.

I have just had a reply saying the autism practitioner who took the assessment will call me, but not until next week.

No, she hasn't completed any questionnaires. They have done a couple of questionnaires with me over the phone, but I don't know what they were called.

I've read so many threads on this site saying about girls with Autism & it's exactly like my daughter!

I just don't know what to do next! I feel like I'm repeating myself constantly but they're not listening! 

That’s rediculous !!! My Autistic son got 11 A* and 4 A’s (at A level). He also had friends at school.

I would seek a second opinion and maybe write all your thoughts down and also get your daughter to do the same.

BTW did she complete the AQ and EQ questionnaires???

UPDATE

I had a telephone post assessment appointment last week & explained everything to them, that we felt they were overlooking all her traits, just because she was "sociable" in the assessment & that she gets on well at school. I also said how I thought she would benefit in the future with a diagnosis. 

She said she would speak to the autism practitioner again who took the assessment & pass on all my concerns.

She called me back yesterday & they have said they think it's social anxiety!!!!

I'm so frustrated I could scream!

She has been showing all the signs since she was 18months old. How can they say an 18month old has social anxiety! She said if she had been assessed years ago she would have probably been diagnosed, but today she won't because she was sociable!! She has learnt how to be sociable - she's had to, to cope!

Where do I go from here? I've asked to speak to the practioner myself & even asked for a second opinion, I just feel like they're overlooking all of her main issues & just concentrating on that 1 aspect. She's not sociable in everyday life, she's very awkward.

Any advice would be greatly appreciated. 

Will do, thankyou. 

Keep us posted though.  Fingers crossed for you that they have some kind of answer that makes sense.

Yes I have done 3, one with the paediatrician & 2 over the phone with different autism practitioners. Plus other questionnaires.

The social side does impact on her life, & if left to her she would hardly leave the house.

Will just have to see what they say I guess! 

There is a criteria that says it must be impacting on life, I believe.  If she seemed chatty they may feel that they didn't see a social impact and there isn't a learning one if her school work is good. 

There is of course a difference between insufficient evidence to diagnose and them deciding that there is no possibility of autism.  It sounds like you need to know which they are thinking and point out that you believe there may be evidence that has been missed.  I'd also let them know what she said about just copying "just what other people say".

I still can't believe they gave this 50 mins online.  Did they take a developmental history from you?

Thankyou for your reply.

The assessment was called The Oxford Virtual Assessment for Autism Tool - and was done by a clinical psychologist & observed by an autism practioner.

It seemed very child like & didn't seem to suit her age - not sure if that's just how it always is done?

They got her to look at a picture of a scene & pick out anything she thought didn't belong there. It was a picture of a children's play park, it had an old lady hoovering the grass, a boy playing an electric video arcade game,someone fishing in a sandpit. She just noticed the see saw looked weird - it was a double one.

Then she had to pretend to be a customer in a shop & ask to pay for her items. She struggled with this, no eye contact, kept looking at me asking what tshe should say. Then she had to be the shopkeeper & she just copied what the lady said previously.

They asked her how it feels when she gets angry & worried, she gave a fairly good description of this, saying her heart beat feels really fast, has lots of thoughts in her head - I said after the assessment was over & no longer online, that she done that part well & she casually said, "oh I made that up, it's what I've heard people say so I just said that!"

They asked what foods she likes & she said there were only a couple things she likes for breakfast as anything else makes feel sick - they said "oh yes, that makes sense then! And that was the end of that conversation! No mention of the other meals in the day, she only eats 3 different meals full stop, things have to be in a certain way on the plate too, 

Then she had to make up a story out of 5 household objects, she really struggled to start with, but she got through it, again copying what the the lady done first.

And that was basically it! They could only see her from the chest up, so all her fidgeting with her fingers wasn't seen.