To ask what symptoms your DC had when you first suspected Autism?

[87SPD]

Just that really,

Our DD aged 11 has been suffering from symptoms of what we have put down to anxiety for a very long time but now wondering if this could be traits of Autism, they include: (apologies for the long list)

• Inability to focus in a lesson - zones out to external noises in the corridor or outside
• Very awkward in social situations, not rude at all but just overly forceful on what she is interested in if that makes sense?
• Very polite, shy and extremely well behaved girl and always has been - never had any behavioral issues with her - never pushing boundaries etc On the odd occasion we have had to reprimand her (for something quite trivial) she gets overly emotional and distressed.
• Issues with certain clothing - will not wear anything that she says is too tight, hates labels, used to have full on meltdowns over socks and shoes. We have had to resort to buying second hand trainers from Ebay just so they are 'worn in' as we got fed up of her not wearing brand new ones.
• Get's overwhelmed in crowded and noisy places but this comes across as quite manic where she is hyper 'switched on' and is unable to enjoy the moment. This usually then leads to an emotional meltdown a few hours down the line with her crying but being unable to say why.
• Inability to discuss any kind of feelings what so ever, has never been able to say she feels sad, happy, low even excited.
• She constantly scratches her neck and rubs her nose even more so in a social situation or when asked a question that makes her feel awkward (question being how are you feeling? for e.g)
• Never able to maintain friendships and has admitted she doesn't like to be around too many people - also she gets very annoyed easily by most of the girls in her year.
• Absolutely fixated on football - to the point where she knows every England players shirt number, the times they scored goals, results of the local team from years ago etc. She will talk about this ALL day long bless her!

There are many more.

She is such a sweet and loving girl who never puts a foot wrong and since starting High School last year she is becoming so withdrawn and anxious. I just want to get help and understand her better so she can feel as happy as possible.

Do these symptoms alone seem enough to pursue an assessment or could this be purely anxiety? We have always just assumed she is a unique and quirky little thing

Any advice would be greatly appreciated :)

Lack of range of emotion
Communication issues
Meltdowns
Struggle with change
No eye contact

Worth investigating autism, also inattentive ADHD and infant reflexes not going dormant.

This has been very reassuring, thank you all. DD15 is just starting assessments for Autism and ADHD and all the OP's listed traits are her to a tee, bar the last one. She's already diagnosed with OCD and a master at masking that, so goodness knows what else she is hiding!

Thank you all for your suggestions and sharing your own experiences. I did wonder about adhd also - the inattentive aspect. There is also the lack of empathy for characters or strangers too, she is so ‘in tune’ with me and has been since birth and I know she is empathetic towards our family unit but she doesn’t even flinch if a dog dies on a programme, has no empathy for homeless people etc. She also can’t maintain eye contact particularly if you ask her a question she goes very awkward.

Is there a general assessment you can have that will diagnose one or the other (or none if that is the case)

I understand with an Autism diagnosis the traits will still be there and that’s fine by us as long as she is happy we just want to understand her world better and accommodate as much as possible.

I am willing to go private but of course don’t want to spend a lot of money on the wrong type of assessment. It’s so tricky!

The clinics all do the same ones …. Ados or disco (slightly longer) for ASD.
Qb test for adhd - which is beyond boring.
Plus the clinic will give questionnaires to you, teacher to gain a better understanding if she can “mask” in an interview (basically “act” like a NT person to gain a deeper understanding of the child)
spd - OT with level 3 for sensory

All takes quite a while even if you go private

Not all schools support private assessment, it’s about how they get funding. So speak to school, find out who the SENCO is and talk to her tutor. You’ll need to find out how the process works in your area.

If she’s really good at masking then school may not have noticed, don’t let this put you off. I found the biggest challenge was educating myself because no one else was going to. I also had to attend the ‘parenting courses’ in order to get through to the assessment stage. It’s a lot of hoop jumping.

Ultimately, though getting a diagnose was to aid and support my children. If they need extra time doing their sats/exams or need to sit somewhere quiet, or they need to take their ear defenders to school or need movement breaks or whatever, then I can make sure school do this. It’s about getting school to make reasonable adjustments. And it’s also about understanding why my children do what they do, so it definitely helps. It also helps them understand themselves.

OP if you are in the SE / London message me. We have just got a private assessment and the first stage was to rule out other conditions or interdependencies with others .
We found the whole experience very positive
Our DD is 11 - she masks at school, has friends etc and highly academic
However they were supportive of diagnosis as she has some quirks and they thought she might struggle with secondary transition
Out of school she has sensory issues, emotional melt downs, sleep issues, rigid behaviours and obsessions. Symptoms appeared at 2.
It took us 9 years before we listened to our gut and went for diagnosis ourselves having been dismissed by GPs.

The diagnosis has really helped the whole family - we support and manage her much better now.
Christine McGuiness documentary (mentioned above) might still be on iplayer. It was v good

To urge you to get her assessed op. I have 3 autistic dds. Until recently 2 were diagnosed and while we were convinced the 3rd was, everything was SO hard getting the other two diagnosed and the third seemed to cope with life. I thought, if something starts to slide, I will pursue diagnosis. Everything for this child went so catastrophically wrong and so quickly. Of course CAMHS ignored the signs and our lovely girl has been forever damaged. We almost lost her to suicide and there was so much more but far too identifying. I regret not trying to help her sooner, but covid seemed to be the catalyst (perhaps there would have been something else?) and then there was v little CAMHS support.

On the basis of what you have described, I would certainly ask GO to refer you on.

fwiw, a private diagnosis cannot be ignored. As long as the diagnosis comes from a suitably qualified team. In all likelihood, CAMHS would accept that diagnosis. I work in this field (mores the shame that I did not do anything to help dd sooner), and schools and LA may try this in terms of independent reports, but they do have equal weighting.

Just to add to the people saying their children are older. It would still be worth pursuing a diagnosis as it would mean they can ask for allowances to be made in the work place etc.

I am autistic and I'd say your list was a very good indication that she is too. Please do pursue a diagnosis as many women weren't diagnosed until adulthood and we have so much grief and anger to work through about how life could have been if only we knew. My mental health would've been better too as the anxiety really is debilitating and being an outsider at school made me feel like a freak and I still haven't recovered my self esteem and I'm in my 40s now.

Once you're on the waiting list for CAMHS then they will send you various screening questionnaires before the assessment. There's loads of overlap between ADHD and autism and some of us have both so I would imagine that they would screen for both.

Exactly like my son who is 12. Diagnosed in 2019. Can't stand labels in clothes, can't tolerate certain textures, does not make eye contact, no friends at all, non verbal at school, knows everything about a certain sport even 10 years before he was born knows all the results, very literal, routines... the list goes on. Good Luck but if you do decide to pursue, it is a very long road with no support afterwards.

Very similar list to my 12 year old who had an ASD diagnosis very recently. We had thought it for many years but were finally convinced to pursue it officially having heard so many adults - friends and celebs - who’d had late diagnoses (of ADHD, ASD, Dyslexia etc) saying how it had reframed their entire life and that they wished they’d known as a child.

So far the diagnosis has been so empowering in allowing us to have much more open conversations about behaviour and my child is really happy to have an explanation for their reactions. It has unlocked some additional support at school that I didn’t even realise would be helpful!

I am so glad that we pursued it before a crisis hit so heartily recommend looking into it sooner rather than later. Speak to the SENCO first and they should do you a referral even if they don’t see any signs themselves. But if you can go private it’s much quicker (but still slow). A good clinic will do a chat with you based on some initial information and help you work out what the right assessment is.

Oh and no one else outside our immediate family unit ever really noticed many traits including both primary and secondary teachers. The Dr said that was not uncommon at all!

@moomoogalicious sounds exactly like my dd but you've given me a bit of hope when you say she is now doing brilliantly

Yes, I would get her assessed.

This is just a general point and not especially directed to OP, but if you suspect anything at all, I'd check it out. Unlike the experience some pps have described, my DS was a very smiley baby, lots of eye-contact, loved cuddles (still does) - but he has a diagnosis of autism too. It presents differently in different people. I sometimes find the lists of traits given in articles to be unhelpful as it's too easy to say...no, look, s/he doesn't do x, y or z, so it can't be autism.

Yea. My DD is 13 and likely ASD, doctors, nurses, Ed psych independently asked me, now her counsellor, so she's being referred for tests, she sounds very similar.
Girls mask it well by the way, test are apparently different for girls as they mask so
Well
Good luck

Thank you all, it seems the NHS referral will take a long time! We are fortunate that we can go private and I have come across an organisation called Healios, they are a commissioned organisation that the NHS use when they have a backlog of cases so I am taking it that a report from here would be recognised and accepted.

has anybody had any experience of Healios at all or any private assessment?

thank you again, the obvious thing from everyone’s comments are how much we love and adore our DC and just want the absolute best understanding of their world 😊

Oh alot of things.

• nonverbal until 5-ish


• developmentally delayed (not out of nappies until 5)


• stimming


• His favourite toy as a baby toddler was the Argos catalogue


• sensory issues


• could memorise credit card numbers at a glance and kept ordering things off amazon (took me longer than it ought for me to twig - he was still non-verbal at the time)


• metldowns

I was in total denial though until his primary school HT took me to one side and suggested gently that we really did have to get him assessed.

I do not know Healios, but we did go privately and he was diagnosed aged 5., with a follow up assessment a year later. It made the process a very great deal faster of course and has helped enormously. We were lucky though that the total cost was circa £1000 I believe it is more expensive now.

Getting a diagnosis has been tremendously helpful. It means that we have a means by which to discuss with his teachers and the school issues relating to behaviour. They work incredibly hard to adapt things for him (He is 12 now). It's been a sometimes difficult road but definitely worth it.

Good luck. :)