Anxiety not always autism?

[Weirdcookie]

Has anyone paid for an autism assessment and been told it’s NOT autism? My 8 year old has had selective mutism and anxiety (vastly improved since she left school 2 years ago) and sometimes has ‘meltdowns’ when we have to leave the house. A few people have mentioned she might have autism but I haven’t seen any other signs. I realise it manifests differently in girls (my son is autistic) but I worked with kids with ASD for 10 years and wrote a thesis on autism so I am well versed. I’m wondering whether to get her assessed by somewhere that will be very ‘real’ - how can I be sure that if I pay privately they won’t just say yes. I’m not in denial, I keep looking for possible signs but honestly can’t see them (I have anxiety too but pretty sure I’m not autistic) and with others I pick it up really quickly. I know many people can have traits without officially having ASD. Any thoughts?

To answer your title, anxiety isn’t always autism. However, from your post I think further assessment including considering autism is worthwhile. As I’m sure you are aware, there’s a higher chance of DD being ND with a sibling with ASD. A good private assessment would never just say yes.

Can you recommend anywhere? Most places charge an absolute fortune but I found this place that offers an affordable initial assessment https://asd-adhd-assessors.co.uk/ No idea how to tell where is ‘reputable’

If you have a household income of less than £45k and they have funding available look at Caudwell Children as they offer assessment at a vastly reduced price.

Sadly many do charge a lot and the cost is ever increasing it seems. It isn’t cheap but you could look at the Lorna Wing which specialise in girls and women. There’s also psychiatry UK, clinical partners? An alternative is to find out if anyone locally who assesses on the NHS also works privately.

If you want a wider assessment, I know a couple of people with similar sounding girls who have been impressed with Dr Ferrin in London.

My DD has SM and we've been told there is a relatively high correlation in girls with SM having ASD so I think it's worth being assessed. I've not looked at the in any detail bit I know confident children offer some SM diagnosis so they may be able to recommend someone to do a full asd assessment

Anxiety can definitely be present without autism, but as pp said, worth pursuing further as your other child is ND and there's a higher chance therefore that your dd could be too.

The Lorna Wing Centre specialises in autism in girls. As with everything private, it's pricey though.

Does she show any behaviours that could be consistent with sensory processing difficulties, however mild? Tactile defensiveness, heightened awareness of noise/ smell. How good is she at identifying how her body feels in relation to her feelings/ moods? Is she able to label the more complex negative emotions like guilt, shame, embarrassment etc? I know you said no observable other symptoms, but they can be really subtle due to masking. Any obsessions/ OCD type behaviours?

No, none of those and I’ve been observing carefully precisely because of masking. She’s always been quiet around strangers and I think separating from her dad has contributed to some issues. But she has no obsessions or sensory issues, relates well to people, eye contact, normal conversations, she usually doesn’t mind plans changing etc We will fill in the pre-assessment forms but I really can’t see how she ticks more than 2 of the 25 criteria.

Oops I logged in from elsewhere!

Yes I do think that anxiety can often now be diagnosed as autism, even on threads on mumsnet any anxiety or behaviour is full of other parents suggesting it must be autism or adhd. Those assessing autism are not using very strict criteria at present, especially as many are masking and so would not pass the ‘old’ criteria, so professionals imho are erring on the side of diagnosis, particularly for girls.

For many this is a good thing because they feel their autism is often masking and so will get diagnosed whereas they would not before. However I have talked to many who do not feel that they need ‘autism’ support, they need mainly support for anxiety and to be accommodated.

We do not look ask the question of whether diagnosis is not always a good thing, particularly if the main presentation is anxiety.

Interesting comments ToastMarmalade, do you work in the field?

@ToastMarmalade my DS was diagnosed with autism but I had no idea it was that. I thought it was social anxiety for which he had counselling at school but he was only diagnosed with autism about a year after that. He has no sensory issues or problems with food where I know a lot of people diagnosed will eat only beige foods. He ticked the boxes for no eye contact, rigid thinking, stimming where he would crouch and rock I never knew it was this as he would only do it when tying his shoe laces. Reading your comments does make me wonder if there is a very fine line with his anxiety and being autistic.

Those assessing autism are not using very strict criteria at present

That seems like rather a sweeping statement. Is there evidence that this is happening?

I’m also interested.

This is just my personal view, and others may differ. However I do feel that the diagnostic process has become broad and not very defined. I believe that this is from wanting to include people who mask, and not be criticised for missing cases. Therefore if someone reports that they can act outwardly ok with social situations but that they have anxiety about them, this is now looked at more openly as ‘could be masking autism’ rather than simply anxiety. Previously if someone had the skills for social situations, they would not be deemed autistic.

Autism used to be defined as those who had all the 3 triads of impairment to quite a significant degree - social communication,interaction and rigidity and repetitiveness. Only those who had obvious significant language delay had a diagnosis of autism. Usually with a range of other delays such as motor skills.

This was broadened when they got rid of Aspergers and for autism you no longer needed language delay.

Then there came the adult autistic neurodiversity movement and a challenge that autism was a difference not a deficit. Which in turn challenged the diagnostic model in a similar way if someone presented as functioning this was now autism and not ‘high functioning’ autism.

And then a greater awareness of women and autism. And masking which was not even in the vocabulary until relatively recently, and now seems very central.

Professionals have a range of tools, questionnaires such as Disco that they then check against criteria in the ICD recognition of disease. ADOS is the ‘gold standard’ diagnostic tool, to try to be consistent across practitioners. Here a child is observed ideally by 2 or more playing with certain toys, asked certain questions. It’s mainly validated for younger children and less so for older. Many diagnosis also differ with practitioners views. Looking at parent forums it seems to vary quite a bit from multidisciplinary teams in the NHS to single private practitioners.

There has been no review nationwide of how practitioners are diagnosing to my knowledge. What we do know is that the % autistic new diagnosis is growing year on year. Many feel this is a good thing and that diagnosis is now getting people it missed. Others think the diagnosis is too broad. Personally I think different presentations should get different names - so am okay with greater diagnosis but lumping such differences as all autism in my personal view is very problematic in many ways.

I think it would be very interesting to review.

So actually no evidence of those assessing autism are not using very strict criteria at present. Just your personal view that late diagnosed 'masking' adults are problematic and causing over diagnosis.

I'm a late diagnosed autsitic woman and the 'gold standard' ADOS 2 module 4 was used in my assessment, in which I scored really highly. ADOS definitely isn't just for younger children and is absolutely used with older children, young people and adults too.
My assesment was multidisciplinary, thorough and the report 52 pages long and very detailed. It was accepted without question by the NHS. In fact it was far more detailed than Ds's NHS assessment and diagnosis at our local child development centre.
My difficulties had been evident from a very young age, just ignored and severely punished as a child. And as a teenager and adult they have led to significant and at times debilitating mental ill health. The impact autsim has on my life is huge and nothing like 'just a different way of thinking' or a 'bit of anxiety'.

That was a bold statement without any actual evidence to support your claim.

Of course more are now being diagnosed with autism, for a multitude of reasons. For a start, as you say, the diagnoses were merged and ASD now encompasses what used to be autism, Asperger Syndrome and PDD-NOS. That doesn’t mean the criteria are less strict, just different.

In order to be diagnosed one must still have “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” which “limit and impair everyday functioning”. (DSM-5)

And “persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication, and by a range of restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual’s age and sociocultural context” that “result in significant impairment in personal, family, social, educational, occupational or other important areas of functioning.” (ICD-11)

The diagnostic criteria for autism and social anxiety disorder are different. One may have both, but your example of social anxiety doesn’t work as no one would be diagnosed with autism with ‘only’ social anxiety.

Prior to the merge, someone said to have ‘high functioning’ autism still had autism, so I don’t understand your point about that.

If you believe certain HCPs are acting unprofessionally you should report them.

I think both your responses shows that there is a real lack of open robust debate around diagnosis and autism in general. It’s full of too much personally attached emotion and ideology.

My reply was based on facts, not emotion. The quotes from the DSM-5 and ICD-11 are facts there for everyone to see. The diagnostic criteria for autism and social anxiety are different, that is fact. Before the change someone with ‘high functioning’ autism did still have autism.

Well said floating. Your reply was based on facts. Unlike ToastMarmalade's post, which is purely their personal views on autism diagnosis, with absolutely no evidence to back what they are saying.