Autism Assessment Query

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Thankyou so much for reading un advance. We recently took my 7 year old to a child psychology clinic because he was having terrible separation anxiety from his dad. At the end of the consultation the doctor told us they think our child has autism.

He suggested an assessment but his dad and I are a bit reluctant. My mum told me that 'everyone who goes to these clinics always comes out with something.'

Im wary of doing this unnecessarily and then him having a SN label for the rest of his life..

i guess my question is have any of you taken your child to a clinic to be assessed and they have come out without a ND diagnosis?

Thankyou so much in advance.

They filter quite heavily in advance, so IF you get as far as an assessment it's odds on that a diagnosis is likely, it's not that they hand out diagnoses left right and centre.

I have a child with SEN so am in quite a lot of groups relating to it.

The sheer number of parents that attend / pay for assessments and come out without a diagnosis is HUGE. Whether they have it done on the NHS or not.

Paying doesn't guarantee a diagnosis. I'd say more people come out without one (possibly they suggest other types of SEN and suggest being referred to other services) than with one.

Agree

I have an autistic child and volunteer for the local autism support group - the majority of people do get the diagnosis during the assessment, but that is because you have to already have a lot of the symptoms in order to get as far as the assessment.

A lot of people do not get the diagnosis because they do not meet the full criteria, but will come out with some kind of description of their issue - so for example you might get a report saying your child has sensory issues which they may grow out of but in the meantime you can do x, y and z to try to help them and the school should be aware of it and offer ear defenders or alternatives to uncomfortable uniforms etc.

A small number essentially get told “we don’t know what this issue is, but it’s not autism” in which case they are bounced on to other services, usually for mental health or physical health issues.

Personally I found having a diagnosis was helpful to get my child the support they needed especially as they got older. Issues such as anxiety often go hand in hand with autism. I waited until end of primary for the assessment. Plenty of people do not get a diagnosis.

It’s not clear if you took him to a psychologist due solely to separation anxiety or did you take him to a neurodevelopmental clinic? Did you complete referral forms/ questionnaires?
I work in a neurodevelopmental clinic. We do screen and gather lots of info from parents and school so most (about 85-90%) do receive a diagnosis.

honestly get the diagnosis. I have a friend who didn’t pursue it as DC managed and did fine, then they went to university and the shit hit the fan. There’s been no support without diagnosis. Now they are trying to get one as a young adult and is all much harder.
Maybe they will be fine but it’s useful to have in your back pocket if you need it.

TBH if a child is autistic it is better to know sooner than later for your child’s sake. My youngest defiantly is, had the initial screenings and is still waiting for the adult diagnostic assessments and is frankly struggling. Until she knew it was autism behind her difficulties anxiety caused her MH was awful and she was drifting down black holes of despair. Knowing she is by tier 2 CMHT and GP till the NHS can have the final formally diagnose has been life-changing for her. Two brothers picked up and supported from early age have far more life skills as a result. That includes eldest who now meets level 2 criteria having started at level 3 and needed special schooling all the way. If I could turn back time and get her diagnosed before she started school I would.

TBH if you have been referred for an assessment there is enough evidence from others that your child could be ND. An assessment will pick up their strengths and areas they need more support so it can be offered. Mostly that’s educationally. Put simply ND means an individual runs on a different operating system and have different needs and ways of learning.

Yes I paid private for two of my children and the third NHS. Two diagnosis and one (private) was ‘inconclusive’ (they don’t tell you the child doesn’t have ND they tell you criteria were not met during assessment.

I think of someone professional who knows ND suggests an assessment you should do it. I wasn’t diagnosed until adulthood as I mask well and am capable- my most obvious thing was anxiety. I’ve suffered a lifetime of not feeling right, not fitting in, leading to metal health issues and being bullied because of my ‘quirks’. Not realising a partner is abusive. Not realising a situation is dangerous for me. It’s massively massively impacted me and left me with so much trauma they may have been avoidable had I understood my differences at an earlier age. Instead I got my diagnosis as an adult when I realised I’m the same as my autistic kids

Wouldn't you rather know? There's no "label", a child doesn't walk around afterwards with a sign above their head. I don't mean to be flippant, but it's a valid point. Your child never has to tell anyone they've been diagnosed with autism, that's their, and your, knowledge. It's private and remains private unless your child wishes someone to know. I wish someone had told me I was autistic with ADHD, instead I grew up thinking I was lazy, unorganised, lacking in talent and perseverance, lesser than others, unmotivated... The list goes on.

I know of someone who went for a private assessment and it came back inconclusive but recommended he be tested again in the future as he was quite young. He has since been tested again privately and received his autism diagnosis. Other than that I don’t know of anyone who has gone for an assessment and not received a diagnosis but I only know of about 15 children who have been assessed so not a huge number

My son was diagnosed with adhd when he was 4. The paediatrician felt strongly that he was autistic and he was assessed almost the minute he turned 7. The panel found that he didn’t have autism.

They were wrong! He was reassessed 2 years later with clinicians scratching their heads trying to work out how it was missed! 🤣🤣

Similar happened with my dd adhd diagnosed peadotriatian said she had asd but the panel didn't agree.
Year of struggling in school.
Got reffered to Camhs when she was 11 and diagnosed with autism after 2 appointments. They couldn't believe she didn't already have an asd diagnosis.

Yep. And sometimes so heavily (or just so reliant on school evidence) that they're filtered out incorrectly.

My DD was initially refused both ASD and ADHD assessments via Right to Choose because of insufficient evidence from the school. (Which is why talks of putting increased onus on schools is not the answer, and arguably an inequality issue as girls are more likely to mask and go under the radar).

I was able to successfully appeal these (and she went on to receive both diagnoses); for the ASD one, DD had already seen an NHS community paediatrician who had recommended she be referred for a full assessment; ADHD because she'd already had a screening with an ADHD and ASD specialist clinician, giving her a high likelihood of receiving a diagnosis.

Do you mean you’d pay for one?

From experience, it’s unlikely the NHS will provide an assessment based on what you have said in your OP. As previous posters have said, they screen people before hand, and separation anxiety is not likely to meet the threshold to be offered an assessment.

And your mum is an expert how exactly?

Much more importantly, a health professional has suggested an assessment and of course you are not required to follow up on this. But is it worth examining your/ dh attitude? Your child won't be any different before or after an assessment but they might get the help they need to make their life just a bit easier.

There are 4 possible statuses:

Your child does not have autism - you get the assessment done and this is confirned. You have eliminated that possible root of the issues and can seek other pathways to find out what kind of help/support he needs. Win.

Your child does not have autism - you get the assessment done and never know whether your child is neurodiverse. This uncertainty could mean numerous different kinds of missed opportunities and inappropriate choices because you won't know. Not ideal.

Your child has autism. you get the assessment done and this is confirned. You then can access all sorts of guidance from other parents of autistic kids and professionals to help and support him to thrive. It's not a "label" it's a lens of understanding that helps you to know what your child needs and how best to meet those needs in a positive way. Win.

Your child has autism - you never get the assessment done and never know. As your child gets older the pressures of living in a neurotypical world gets worse and worse. Eventually something snaps, probably either during GCSEs or A-Levels or degree study, and your child cannot cope any more, does not thrive, does not reach his potential. Worst possible outcome.

Not getting a diagnosis does not make it go away if it is there. Getting the assessment done does not magic the condition into existence if it's not there. Your mum's claim that everyone gets a diagnosis of simething is ignorant and wrong.

Thankyou so much everyone this is so helpful and reassuring we are doing the right thing by going ahead. We went to a child psychology clinic that work
in all kinds of issues .. the one we went to them for was separation anxiety - thinking they would recommend a therapist but at the end of the session the doctor said he thought it could be autism. It was all very akward as my son was there and the whole conversation was in front of my son and my sons dad and I felt very uncomfortable talking so openly about it infront of him.

Thanku so much though I really am very grateful for your advice 🙏🙏✨