Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Teenager with ?Aspergers, is it worth getting diagnosis

5 replies

Mistressofpemberly · 22/01/2021 23:44

Hi, my 14 year old daughter has always had difficulties that concerned me re: Asperger’s. Primary school were always very dismissive of concerns as she is extremely bright, excelled academically, and was quite engaging to adults from an early age as outwardly quite sincere and serious thus labelled ‘mature’. In the end I just abandoned my concerns as she was not unhappy or a problem and just lovely and it didn’t seem important one way or the other.

Now she is a teenager she is struggling more. She is isolated at school and only makes ‘friends’ with slightly odd and isolated kids and isn’t close to anyone ie no out of school contact even on the phone. She is excelling academically but obsesses over topics eg Harry Potter /Star Wars and Rereading particular books. Even prior to lockdown her communication skills were not great ie. talks at length ‘at’ people, with some speech ‘dysrhthmia’ which makes the talking ‘at’ is extremely lengthy. Lockdowns initially pleased her as she did school work quickly and was delighted not to have to deal with ‘people’. I find her quite exhausting as I have explained so many times the difference between conversing and talking at people but it doesn’t help. She either says nothing at all or just gives a relentless monologue of an entire book. The little social contact we have had recently has made her very anxious. ? Related or just Covid isolation.

I really worry about her isolation and ability to relate to people. She is very mature physically. Not showing interest in boys but has received some inappropriate attention and I worry that isolation and lack of confidence socially will make her vulnerable to poor relationships.

Is it worth trying to seek assessment? I don’t know where to start. Does having a ‘label’ help to understand and deal with some of the behaviours and could it help her to embrace her slightly unique self and deal with the anxiety?

Would really appreciate some viewpoints ! Thanks (sorry long post)

OP posts:
BlankTimes · 23/01/2021 19:09

It's very typical for a school to discourage parents from seeking a diagnosis for a child who is not disruptive.
As you've discovered, undiagnosed kids get so far and then it does become a problem for them. There's no single age when this happens, for some it's starting school or earlier, for others it can be into middle age. The one common denominator is they manage okay until they don't. Well done for spotting your DD is struggling with social communication.

How open is she to the idea she's autistic? That can play a large part in the diagnostic procedure. Girls and women present differently to boys and men and most diagnostics are very male-based.

The NHS route is a long one, pre-covid waiting lists were 18 months to 2 years in many areas, but don't be put off, do check with your GP. see/phone chat him/her on your own initially with as many examples as you can of your DD's behaviour that's different to her peers to outline your concerns and ask for a referral.

Otherwise, you can have a private assessment, but make sure whoever does it also diagnoses for the NHS as some local authorities refuse to acknowledge private diagnoses.

Lorna Wing is the Gold Standard, others can vary quite a bit, some including LW do what's called a 'pre-diagnostic' which will let you know if it's likely autism could be applicable. You've already outlined enough in your post to suggest it's a possibility. There are a lot of online questionnaires that can do that for free, e.g. the AQ test.

There are lot of channels on youtube by autistic young people, if she's not already watching any, perhaps research some yourself and if you think she'd enjoy them, watch them together. There are a good many about autistic anxiety.
As a parent, I like to watch Purple Ella, she can verbalise things about being autistic that my DD can't so it helps with my understanding.

You will notice that the more anxious your DD is, the more you notice her autism. If you can keep the anxiety at manageable levels, everything else seems to subside, at least that's how it is in our house.

The NAS have revamped their website so everything I could have linked to easily for you is now somewhere else, try this if you haven't already.
www.autism.org.uk/directory.

Autism terminology often changes. Asperger's has been omitted from the diagnostics because Hans Asperger had a murky past, nowadays the diagnosis tends to be ASC or ASD. C for condition replacing D for disorder.
Diagnosis is a complex process, it's not someone just picking a term out of thin air after reading a parent's description. I've no idea how it's carried out during lockdown but pre-Covid a child would be seen by a team of medics, usually Paed, Salt, OT and Ed Psych in at least 2 different settings, then the group would discuss their findings and prepare a comprehensive diagnostic report of attributes, deficits and recommendations.

That's a very longwinded way of answering Yes to your question "Is it worth trying to seek assessment"

Mistressofpemberly · 23/01/2021 20:50

Blanktimes thank you for your reply including helpful links.

She is open to the idea. Her older brother mentioned it to her 🙄. She googled the diagnosis and recognised the description as being ‘me’.

The anxiety and isolation are my main concerns. Really helpful insight. Thank you for sharing. I’m going to look in to where to start.

OP posts:
ofwarren · 23/01/2021 21:10

My eldest was diagnosed at 13. School organised a educational psychologist and he said it's probably Asperger's and the school put support in place straight away.
His actual diagnosis was done at the hospital.
He is at college now and gets extra time in exams and cam do it in a separate room. It really has opened doors for him.

TheVolturi · 25/01/2021 16:32

I would try to get a referral.
My child has just been diagnosed with Autism age 8. He is clever and lovely but struggles socially and I am glad he's been diagnosed so that he we can seek help for him as and when he needs it.
He is very newly diagnosed though so I am not sure yet what help there is.

stairway · 01/02/2021 16:29

She sounds a bit like my son. He is actually a dream child and has had no issues not going to school and not interacting with boys his own age in lock down. He is a delight really in terms of his behaviour. However the lack of any need for interaction with his peers and his obsession with certain limited topics has made me think he was on the spectrum. In primary school he was obsessed with black holes and bacteriophages. His current obsession is with robots taking over the world. He will spend his free time watching science videos and obsessing about deep concepts.

New posts on this thread. Refresh page