To not be able to work my DS out

[ChristmasIsComingRealSoon]

Can anyone diagnose my DS?

11 years old
Extremely loving.
Affectionate.
Adores cuddles.
Very generous with his love, very easily expresses love and affection.
Smiles often.
Laughs easily.
Brilliant sense of humour.
Makes others laugh.
Emotionally intelligent.
Brilliant conversationalist with me and DH.
Excellent eye contact with me, DH, sibling.
Clever at English, history, geography, science.
Horrendous at maths.
Loves swimming and cycling.
Loathes team/competitive sports.
Appalling conversationalist with peers.
Poor eye contact with peers.
Poor eye contact with my adult friends.
Poor conversationalist with my adult friends.
Incredible interest in weather, weather forecasts, weather patterns, weather in all different areas of the world, historical weather, floods, heatwaves, hurricanes, storms, temperatures. Spends hours searching online about weather.
Wants friends and enjoys company but really struggles socially.
Struggles to maintain friends.
Suffers quite badly from sensory overload.
Repeats words and phrases, to the point of driving the family mad.
Low self esteem.
Cannot listen to the word 'stop'. Won't stop when told to stop repeating words and phrases. Won't stop when told to stop winding sibling up on purpose. Won't stop when told to shut screen down.
Really, really hard to motivate to get ready for school/bed/clubs.
Gets highly, highly irritable when using screens, to the point where screen time changes his mood and he becomes really rude and snappy, despite being usually polite and well mannered, even after only half an hour of use.
Gets sucked in to screen time, cannot log off, cannot stop searching Internet about focused interests, Gets really cross at me limiting his time online.
Highly sensitive.
Seeks endless reassurance that we love him.
Has tics, vocal and motor.
Touches and taps windowsills, sinks, taps, walls, fences, bins, doors, furniture.
Walks forward, back, sidesteps, then repeats the pattern before continuing to walk normally again.
Petrified of shower water going in to face.
Petrified of shampoo going in to eyes.
Won't shower himself, insists on me showering him but then shouts at me in the shower through the sheer stress of being showered. Unbelievably remorseful afterwards about shouting at me, says it's really stressful in the shower, can't help it, and says "I feel bad about myself now" afterwards.
Smiles at himself in mirrors.
Kisses 10 cuddly toys and a clock in a ritual before bed every night.
Gets sudden onset anxiety attacks, to the pointvof chest pain, hard to pinpoint cause.
Gets anxious about all sorts of things.
Sometimes sleeps soundly through the night, other times lays awake for hours in the night.
Gentle.
Kind, so unbelievably kind.
Doesn't know how to start conversation with peers.
Doesn't know how to initiate friendships.
No interest in music.
No interest in pets.
Retains random facts.
Incredible, quite unbelievable long term memory.
Appalling short term memory.
Calm when not shouting about the shower.
Really amazingly good at explaining and articulating his thoughts, feelings and emotions.
Incredibly in touch with how he feels.
Has a soft, kind face.
Unbelievably loveable.
I have such a strong feeling he's different to his peers.

You're on point about the tone. People on here can be such lemmings. I'm glad the OP has had some kind and helpful responses after the first wave of pointless piling on by bell ends.

He could possibly have dyscalculia if he is struggling with maths? Is this something you could raise with his school and see if he could get assessed & some additional support.

Sounds like you have a great relationship with your lovely son and this will help him enormously with whatever struggles he has.

I would focus on the positives and try to work on the areas that are causing the most problems until you can get further help .

People on Mumsnet can be so mean and nasty. This thread has received some awful harsh replies to a lovely mother just wanting a bit of advice and support. OP I have none to give you other than your son sounds so lovely. I understand what you were hoping to achieve by posting, maybe someone has been there with their child, knows another with the same behaviours that has a diagnosis etc. I'm sorry you mostly got dickheads replying instead.

I’d look at a private diagnosis if I were you , get something in place before secondary .

Hi OP, a few things.

If you Google "your local authority name" plus "local offer" you should find a page with parent support groups. The parents in those should know what the local situation is for assessments.

That is important because it is area dependent how referrals work.

CAAMHS have got a poor reputation. Yours may be OK, but you could easily wait two years and find they don't do much or discharge you. Watch out for them discharging you "because they haven't heard from you."

The assessment you probably need is ADOS. Your GP may be able to refer you using Choose and Book, especially if you are able to travel. Start getting quotes and saving in case CAAMHS turn out to be useless and you need to get him a private one.

Obviously schools should meet needs not diagnoses but it is surprising (or not) how little they will do when there's no piece of paper and child is "fine" - until they're not.

When we finally got to see the NHS paediatrician (it took 3.5 years) he knew of "tertiary" services for adolescent mental health support and parenting that we weren't aware of (despite my thinking I was fairly clued up) - these services don't exactly advertise.

Prepare to fill in millions of forms. Keep all paperwork. Do everything in writing not on the phone. Dedicate a specific slot every week (ideally more) to politely and firmly following up on referrals and information.

Politely hassle hassle hassle the people responsible for waiting lists. The squeaky wheel gets the grease. Say you will take a last minute cancellation or travel. Often they actually do have slots but they don't tell you till you ask...

Putting a complaint on Care Opinion may help you find the waiting list administrators if that's an issue.

Get some support for yourself. We found NVR useful and it was cheap too compared to everything else!

Good luck.

In the meantime, respond to the practical issues as others have said.

Another thing.

Don't expect other people to "get it" whether that's posters on here, school staff, your partner if you have one, your mum, other mums....

People think they know about SEN but very few people know the key knowledge and unhelpful myths and suggestions abound.

There are some very knowledgeable posters on SN boards on here though.

These replies are awful. There’s a mum here who’s trying to help her son, isn’t getting any answers through the usual medical channels and is asking if people have similar experiences to offer suggestions that she can follow up.

And there’s a page full of knobbish and petty messages. I usually think Munsnet is a great place for support and information but I feel depressed by how people are behaving.

in some areas he may be under community paediatrics while at primary.
double check with the school

There's something about AIBU. I've been on the receiving end before. It represents the worse elements of online communities.

I'd do this too.

He sounds like a lovely kid and it’s great he has your support.

My daughter sounds similar in lots of ways and I suspect some sort of neurodiversity (she’s 6).

Most people don’t see it as she does well at school and the challenges are almost exclusively at home.

Lots of the things you’ve mentioned could just be personality quirks but taken altogether does suggest a pattern that may need more support.

I’ve followed the OTButterfly on Instagram for a while and she has some great advice on parenting neurodiverse children especially in relation to sensory challenges.

If you don’t have children with sensory issues I think it’s impossible to imagine how tricky some day to day/hygiene tasks can be to get through for sensory sensitive kids. It’s totally understandable that you’ve developed some strategies that other people find odd to cope with them. You have to parent the child you have in front of you and it sounds like you’re doing a great job of that.

If you’ve tried lots of strategies to change something and your son still doesn’t do what what you want him to (or what you feel you need him to) it’s probably because he can’t do it (yet) not won’t.

I found reading about impulse control and demand avoidance in kids helpful. Hasn’t solved anything but it’s given me a new perspective and ideas for different strategies to try.

It’s great you’re keen to understand your son better - good luck!

OP, I had loads of quirks at that age and some of what you have written resonates with me as a child.

Have a read up and look into - OCD/intrusive thoughts, anxiety and low self-esteem - see if any of it makes sense in relation to your son.

Something else to consider and possibly save up for is an Occupational Therapy assessment from a private service where the OTs are specialised in sensory integration. We had one of these and it was £650 I think (which is a lot cheaper than ADOS because you only need one professional rather than two). That was in central London so probably cheaper elsewhere. We got recommendations from other SEN parents to find OTs to approach.

Autistic? OCD? Sounds exactly like my autistic nephew.

from experience these behaviours are very typical for those diagnosed with an OCD, anxiety, autism mix. In your shoes I’d pay a psychiatrist who works both nhs and private to diagnose ASAP. Then get an EHCP in place ASAP - you can do it yourself if the school is disinterested. From experience, schooling often gets trickier once neurodiverse children hit puberty (mainstream state schools regularly fail to meet needs), with issues becoming increasingly evident, resulting in more extreme behaviours/engagement issues. Higher the stress, the higher the anxiety, the more problematic home or school behaviour, the more rituals increase and any PDA (if PDA is evident). The psychiatrist may need to prescribe medication potentially, although there are many strategies which can be put in place. Access the national autistic society online and search for information. I’d recommend implementing visual timers, social stories and routine around computer use. Above all your son is very lucky to have a such loving parent who can advocate for him and help his needs be met. Over the years you love, care and support long term will be his anchor which will keep him steady when seas are rough.

Yes the OT sensory assessment is a good idea, also speech therapy assessment potentially

OCD stood out to me too (as someone who has it). I think you need to go back to your gp and ask for more support because OCD can get worse. The spitting thing might be a compulsion and so part of OCD. It’s not something he can fix on his own by someone just telling him stop doing it.

Some of the responses on this thread are bloody awful and reflect incredibly badly on the individual posters. Ignore them op

My autistic DC doesn't have OCD but when under stress, does tend to get intrusive thoughts and obsessions.

You definitely can't reason her out of them.

You can work on reducing the stress though.

You may get further if you ask for a referral specifically for the tics - perhaps say about them potentially causing social issues.

I say this because I have been waiting four years now for an ADHD assessment for my already asd diagnosed son with bugger all happening, yet have had a lot of help, onwards referrals etc for his tic during that time. It seems to be an easier way to enter the system for some reason. May be area dependent of course.

The EHCP process would potentially be a way of accessing assessments without paying.

You do have to hassle hassle hassle though and be prepared to have your parental ECHNA request rejected and appeal to the tribunal (parents win over 90% of those appeals though).

If it's like round here, you just have to wait. Cahms said similar about ds. Running away from home and his other issues aren't serious enough. He's been referred to community paediatrician and action for children, but that was 3 months ago and I've heard nothing since.

You have posted in the wrong part of the forum, I'm afraid, and you have come across the nastiest side of Mumsnet. A IUB seems to be used nowadays people just being really horrible towards other people.

Ask Mumsnet Talk to move this to special-needs where you will get a lot of support.

Or you could ask them to cancel this, and then start a new thread with the same information in the special-needs section.

Many people on this thread should be ashamed of themselves. This woman is worried about her son and you are just being absolutely horrible to her.

OP, my son also 11, shares some of these traits.
He repeatedly asks questions, has verbal tics, interrupts all the time, is emotionally very immature yet affectionate, has low self esteem with anxiety and occasional panic attacks etc. Socially he makes people laugh so thankfully can form friendships easily.

We had him privately assessed and now on the CAMHs waiting list for suspected ADHD - from what it sounds like, your son might have this too? I have since found out there are cheaper online tests to diagnose this - QB tests. These cost £300 and the outcome may help move your son up the CAMHS waiting list.

Is he in Yr7 or Yr6? A QB diagnosis may help in order to get him on the radar with SENCo at secondary school.

Hope this helps.

Good luck!

As an autistic mother of autistic kids o would say your son is some combination on autistic ocd possibly adhd. as he's doing fine in school you won't get any support. you can see from the reactions in this post how the world treats autistic people.

start saving up for private diagnosis.

Diagnosis does not bring support but understanding why you are different and that it's not a fault with you can really really help so it's worth it for that.

A sensory interaction qualified OT is the person most likely to help you. Otherwise join SEND online groups and ask questions as they are amazing support and the advice is quick and free. You just have to remember they are not drs