ASD help please Post Reply

[potluck]

Hello,
I'm hoping to get some advice for my 10 year old son. He's a bit quirky, strong-willed, single-minded and can get fixated on things. He finds it very hard when someone says no to him, and doesn't understand why an adult has more authority than him! I have thought he may be borderline ASD (or old term Aspergers) over the years, however, we kept brushing it off thinking it may just be immaturity and he'll grow out of it. I now think he needs to get assessed - some of his classmates are being unkind and calling him 'weird', and I think it may be affecting him academically. He was really upset, and I think he's aware that he may be a bit different. Can anyone recommend who to see for an assessment? I've been reluctant to get him labelled, but I don't want him struggling and instead I want him supported and to find ways to help him. I've been recommended the Family Treatment Service in Wimbledon. Anywhere else? Thank you. 

[Jonny Dyson Property Consultants]

Hi Potluck, my 14 year old daughter was recently diagnosed with ASD, which is a broad brush term for all Autism, but hers would have been called Asperges until recently. We went through a similar process that you are going through now, with her predominant label being ‘quirky’.  All the way through primary we kept on asking if she could be dyslexic but school kept on saying no.

When she started secondary the school noticed something was off, and suggested that we had her tested for ASD but COVID got in the way so the tests have only happened in the latter part of last year.  The tests take quite a while, and are certainly not cheap (think around £2k), and involve several sessions with you, you and your son and so on.  In total I reckon it all took around four months from start to finish, and there was quite a long waiting list.

We used Dr Elizabeth Kilbey in West Wickham (she was recommended by school) who was excellent, and we are so happy that we have now confirmed that she has fairly significant ASD.  We have all learned so much since the diagnosis, as it explains so much for both us and our daughter.  There is no “fix”, but what it does do is give you some tools and strategies about how to deal with various situations.  Whilst our daughter was initially upset that she didn’t find out earlier (“I just believed that everyone thought I was weird”), over the last few months we have talked very openly about it and have been amazed at the kindness and understanding people now show her.

I did think about posting my reply anonymously or simply sending you a private message, but as a family we have very much taken the approach that it is something to be completely open about, as frankly the more people who understand that whilst it certainly has some downsides and frustrations, Autism is also a serious superpower – you’ve just got to figure out how to harness it.

Very happy to chat through the process and results if you want to PM me. It’s certainly one of the best things that we ever did, and our daughter has never been happier.

[potluck]

Hello. Thank you SO much for your reply. In addition to your helpful feedback, my son's school has confirmed it would be a good idea to go ahead and get an assessment as they believe its likely he is on the spectrum. They have also spoken to the boys and explained the importance of being kind to others and understanding 'difference'. I feel a huge relief as it explains so much. I look back on the early years where my wonderful boy used to get disapproving looks from 'certain' mothers in the playground, or more recently 'he's a bad influence' from a so-called friend of his; all heartbreaking to hear, especially when his sibling was told this in the playground. It's a shame many are still clearly oblivious of not only how 'boys' can behave (sorry to stereotype) but also how children who may be wired a little differently may behave. I wish every school made it compulsory to educate parents and children - instead of having to try to 'explain' behaviour, and even end up apologising for it. With us, it's been very borderline and we weren't sure if it was lack of maturity or just being 'difficult' - however, I have always known he was a little different. I absolutely agree with you that its important to share the hugely positive messages of ASD as I couldn't think of a more interesting, funny, quirky, loving and engaging person to spend time with! If you don't mind I might contact you directly once we are a bit further down the line. Thank you again for replying. I feel a huge weight has lifted. Have a good weekend.

[Dud1ey]

Hi potluck
Fellow parent with ASD child here. If you can afford to go privately, I’d do that - given how close your son is to secondary school applications and how important it is to choose a new school that will be able to meet his needs. Otherwise I believe it’s over a year waiting list on the NHS.
We went to Dr Eleni Paliokosta at the Effra clinic. She was incredible and we would very much recommend her thorough and caring approach.
Ask your school SENCo about a ECHNA with a view to getting an EHCP for your son. You don’t need a diagnosis to do that. The EHCP has made such a huge difference in our case - and our child, with the right support, has had a happy few years at school so far.
Best of luck

[JJJiwa]

Hi

Mum to 6 year old child with ASD here.


Try the company Autism unravelled - we got the diagnosis from here privately - it costs about £2k.

Good Luck

Thanks

K

[Kirsten Botting]

Try  Kiki's Childrens Clinic -124 Thurleigh Rd, London SW12 8TU
Kiki is amazing and she has a fantastic specialist team.

[Flambeau]

Hi,

I just wanted to second what poster Jonny Consultant Property?? wrote that ASD is a super power!

Your child thinks and sees the world differently and that uniqueness is their special thing.

I am amazed at how much our child has developed and progressed. He is fantastic, we’ve gone along with all of his specialised areas of interest and subject knowledge.

Some more interesting than others - geology was tedious but everything about spies was very interesting. We’ve learnt so much!

I do remember the tears and hurt feelings(mine) from around ages 5 -7years because of family members and other parents who didn’t understand.
Fortunately people, schools and society are much more aware and understanding of neurodiversity.

We did get the diagnosis at age 7.5years and it helped so much, we were able to access support systems, networks and our parenting approach adapted because we understood more about how our child thinks and sees the world.

Our local Autism awareness chapter was great(making friends with children with unique or similar interests) and primary school were fantastic in celebrating difference generally and not specifically one child. Getting in class support and pastoral programmes with social interactions, confidence building and emotional management.


It does get better! Your child will develop and flourish right before your eyes.

The diagnosis phase can be long if done via the NHS but still engage them and Wandsworth autism service and your SENCO at schools to get that support for him.

It does get better!

[Jonny Dyson Property Consultants]

A very good friend of ours has a son who is autistic and sent me the following - I just thought that it was an interesting piece to read, and I have sent it to a number of friends who struggle to imagine what it is to be autistic.

 

This poem was written by a 14 year old girl whose brain is neurodiverse.

 

I walk the world with different eyes. 

I think my ways with different vies. 

I speak rudely, as it seems to you. 

I speak truthfully, it’s just my view. 

I don’t have a filter, the world thinks. 

I just say it how it is, it’s nothing new. 

I am rude for not looking in your eyes. 

I am selfish for not liking your food. 

But you try going a day walking in my shoes. 

The lights are too bright, the shop is too loud, my clothes are itchy, there’s too big of a crowd. They’ve changed the packaging of my food, I can never eat it again, they’ve ruined my mood.

I don’t understand your social cues, some may say I can’t read the room. 

They smiled at her they must like her more, is it because she’s normal, am I a bore? I wish to be like the rest, days out, partying, not confined in my own nest. 

I have my own little world, cooped up in my head, the safest place from this society mess. It can get a little lonely feeling so unalike, but at least I can skip the long queues at Alton towers, right? 

I stare at others wishing that could’ve been me, all the beauty of life I can’t see. 

This shoes tighter than the other, my sock is aggravating me mother, they’ve changed my recipe to my safe food, the logo is different now I’m screwed. 

You may call me different, a freak perhaps, but you will never understand the way my brain works, it’s like an upside down map. 

But there’s charm in my brain that others don’t have, I would sell my soul to help a friend, an animal, or even a Teddy at that. The sympathy for others I hold in my heart is a gift that many other people see as art. I love and care too much they think but there’s so much to love if you just believe. 

I'm made to think I'm different from the rest but what if it’s everyone else’s brains that have been scrambled and messed?