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Re: 3yrs old Autism - help/advice

by Dudley » Fri Oct 18, 2019 9:36 am

Thank you so much 2009Kat, this is incredibly helpful, I really appreciate the time you took to reply. I’ll look into all these options.

Re: 3yrs old Autism - help/advice

by 2009Kat » Wed Oct 16, 2019 11:24 am

Also national autistic society. I think the Lambeth branch is more active and have Monthly meet ups/coffee somewhere in Clapham.

Re: 3yrs old Autism - help/advice

by 2009Kat » Wed Oct 16, 2019 11:22 am

Hi Dudley
You could try:
SEN talk - local organisation that has a monthly parent coffee morning. They also provide support to parents. SenTalk.org

Contact - run a coffee morning too plus other activities. Catch them while you can, services under threat.

Twitter
Join Facebook specifically for this reason and join some groups!

If you pm me I might be able to point you in some other directions.

Re: 3yrs old Autism - help/advice

by Dudley » Wed Oct 16, 2019 9:18 am

Hello, I’m hoping some of the experienced parents on this thread can help. I’m feeling a little overwhelmed and worried and would love to join a forum with other parents of kids with ASD. We’ve been coping on our own for a while now, but it’s lonely. Unfortunately we’re not on Facebook, is there any other way to connect to some of these forums?

Re: 3yrs old Autism - help/advice

by Braintrainer » Mon Aug 12, 2019 9:12 pm

Haven't posted for a while as I have been focusing on our clinics in Surrey & Hampshire, but we still have a 6 day a week presence in Nappy Valley in our clinic at the top of Falcon Road.

We get very good results with neurofeedback therapy for ASD children. The good news is we don't need a diagnosis to help; the bad news is it's private self-pay, unless you can convince a local NHS Clinical Commissioning Group to pay for it (one mum had some success in Kent with her autistic son).

Here is a link to our ASD page and a comparison with ABA and other behavioural interventions: 

Overview: http://www.braintrainuk.com/neurofeedba ... order-asd/

Comparison with ABA: http://www.braintrainuk.com/neurofeedba ... r-asd/#ABA

Regards,

Stuart

Re: 3yrs old Autism - help/advice

by anootka » Mon Aug 12, 2019 2:53 pm

Ladies please do join us local
Mums on a closed Facebook page ASD CHILD IN SW LONDON all of whom are in the same boat at different stages. Lots of information available regarding ABA, treatment, activities, play dates, schools etc.
Anna

Re: 3yrs old Autism - help/advice

by Simvalley » Mon Aug 12, 2019 10:03 am

Hi all, thanks for your messages, we are feeling a lot more positive about the whole situation than we did a few months ago. It’s also very reassuring to hear stories of parents whose child has made great progress with early intervention.
After lots of research, we’ve dicided to go with some therapies at Petra’s place as there are a lot of different therapists (salt, OT etc) under one roof. Our health visitor has also been really good and signed us up for some social communication groups through the NHS. These have been really good. Combined, our son has already made good progress but I know it will be an ongoing thing.

In relation to a different comment, you do not need a diagnosis to get and EHCP as long as there is evidence of additional needs. With the NAS diagnostic service- I think that can be a faster diagnosis but as it is private, it is not recognised by all councils. We know this because we looked into in initially- also, NAS won’t make a diagnosis before age 4.
Anyway- thanks again for the reassuring messages - they have definitely made us feel a lot more hopeful.

Re: 3yrs old Autism - help/advice

by mum99 » Mon Aug 12, 2019 8:50 am

There is (was!) an NHS fast track triggered when more than one professional raises an issue around a child, ie in your case SALT & school, so you may get a diagnosis sooner than you think.

If not however & you want to go the private diagnosis route, I would recommend you see somebody with decades of ASD experience who are leaders in the field as their reports will carry weight. I'm thinking of Dr Daphne Keen & Prof Gillian Baird & her team. I have come across both in the NHS system and they are both super-insightful and kind.

Like the earlier poster said I wouldn't hesitate to go for an EHCP as soon as possible, LA (and possibly school) will try and spin it out as long as possible, IPSEA is a good place to start with info on this.

I'm not aware of the early interventions you mention as my ASD daughter is in her late teens & we were in the dark ages of interventions (or it felt like it!).

I would sound a note of caution about ABA though. While it can work really well for some children, for some kids with certain subtypes of autism eg PDA & other more complex types it can be quite traumatic and counter-productive. This was our experience anyway but try things out and see what works for you, there is no one size fits all for autism.

Good luck, I hope you get the answers you need soon. 

Re: 3yrs old Autism - help/advice

by ronich » Mon Aug 12, 2019 7:53 am

I am a local private speech therapist and have worked with a number of clients facing these challenges. I understand as a parent as well how worrying even the thought of a diagnosis can be.

I work with a fantastic psychologist who has can diagnose autism. His name is Dr Marty Chalk with Psychology Solutions. http://www.psychological-solutions.org.uk/who-we-are

If you need anymore information I am happy to have a quick chat. You can email me on speechtherapysouthlondon@gmail.com.

Best wishes

Re: 3yrs old Autism - help/advice

by 2009Kat » Fri Aug 09, 2019 11:32 am

Dudley you absolutely do NOT need a diagnosis for an EHCP. An EHCP is needs based and the legal framework does not require diagnosis. However a diagnosis certainly helps with evidence of need as the reports spell out the areas of difficulty. Parents are told many things about requirements for EHCPs, contact SOS!SEN or IPSEA for impartial legal advice (there are lots of resources on their websites).

My point on skipping the queue was related to jumping up the NHS queue not to getting a private diagnosis generally. Obvs plenty of people go private with healthcare and that’s just life!

Re: 3yrs old Autism - help/advice

by Dudley » Fri Aug 09, 2019 10:55 am

We were told we definitely needed a diagnosis to get an EHCP at school. And we didn’t feel that getting a private diagnosis was skipping the queue, it was just helping us come to grips with our child’s needs a year sooner and make appropriate interventions as soon as we could.

Re: 3yrs old Autism - help/advice

by 2009Kat » Thu Aug 08, 2019 9:28 pm

I suspect the NAS website comment is just to get a diagnosis quicker rather than jump the NHS queue (there is a backlog unfortunately). There tends to be a “fast track” NHS process so perhaps you’d get on that - not sure how fast it was but we were on it because it was blimmin obvious that my son had ASD and we parents had come to that conclusion (some other cases perhaps more wait and see...).
We didn’t pursue a private diagnosis because we knew it was ASD and so spent our money on additional private therapy in the meantime. You do not need a diagnosis to access therapy or support in school but it does tend to help as the underlying need is recognised.
Good luck x

Re: 3yrs old Autism - help/advice

by Bunnypigeon1 » Thu Aug 08, 2019 7:20 pm

Thank you @Dudley- I have reached out to her.

@2009KAT- yes I found it strange too but it was the GP who told us this and, on the autism.co.uk website it does say: “Private diagnosis is an option, if you can pay for one, and can reduce the waiting time“.
It perhaps sets you down a different pathway where an initial diagnosis is bypassed and you are directed straight to a specialist team? Just a guess....

Re: 3yrs old Autism - help/advice

by 2009Kat » Thu Aug 08, 2019 7:08 pm

Bunnypigeon are you sure that will accelerate the nhs process? Who has told you that? I would query how it is fair for someone who is able to pay for a private diagnosis to jump the NHS queue when some families have to wait years as they are unable to pay. You may just have to sit it out on the NHS and use your private report for indications of need in the meantime.

Daphne Keen is often recommended privately (for many years she was the wandsworth Nhs consultant). Others I’ve heard of using doctors at the Portland but can’t remember the names.

Re: 3yrs old Autism - help/advice

by Dudley » Thu Aug 08, 2019 6:45 pm

@Bunnypigeon - I was recommended Eleni Paliokosta on this site and couldn’t recommend her more highly. We have a slightly older child diagnosed with ASD. We needed a diagnosis to get extra assistance at school but the NHS waiting list was over a year. Eleni was so approachable, understood our child straight away, and took extra time to talk us through everything. https://effraclinic.co.uk/users/3-dr-eleni-paliokosta

Good luck.

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