3yrs old Autism - help/advice Post Reply

[Simvalley]

Hello community,

We suspect that our 3 yrs old boy might be on the autistic spectrum. He has been seen by speech therapist on the NHS for 6 months (3 sessions in 6 months) and they have now concluded that he needs to be assessed by a developmental pediatrician. Also the inclusion officer at his nursery has indicated that it's more than just a speech delay. His communication is very behind and in the past 6 months he has withdrawn a bit, especially from his peers. He now seems to play in parallel with his peers rather than "with" them. He has also reduced making eye contact and sometimes he doesn't respond to his name. He hasn't been diagnose yet, but I can feel in my bones that something isn't right. I have been researching autism incessantly for the past 2 weeks and am now sure that he is autistic (I think mildly as he still makes eye contact and he's very affectionate). We want to try to do as much as possible in terms of early intervention asap. Don't want to (necessarily) wait for an official NHS diagnosis which could take several months..
I have been reading about ESDM (Early start Denver model) and PRT (Pivotal response theraphy)..
Has anyone got any feedback on these therapies and can you recommend clinics or specialists?
There are now to many symptoms that point toward ASD, we know that this isn't just a phase that he will grow out of.. we need real advice from people that have been in the same boat as us.

Thank you.

[2009Kat]

Hello and big hug, you must be having a very worrying time.

These therapies are basically forms of applied behaviour analysis (ABA).  My son has been on an ABA programme for the last 3 years to great success (more the verbal behaviour methods).  I think many ABA professionals use the ESDM for very little children and that PRT is less used (mainly I think because there are less practitioners).  Please PM or email me if you would like to have a chat, any recommendations or places to look further.  

There are also some facebook groups run by some lovely local mums that may be helpful:
- ASD child in SW London (more ABA mums on this group)
- ASD SW London (less ABA but often more active)

Also ABA specific facebook groups - ABA Parents UK

ABAA4all - ABA access 4 all - look at their website, good information about ABA and the various methods and a facebook page.

Good luck
x

 

[redfernpsychology]

We would be happy to see you and your child for an assessment if you want to be in touch via my practice.

I am a consultant clinical child and adolescent psychologist with over 25 years experience, and at www.redfernpsychology.org we assess and treat children with the whole range of emotional, behavioural and developmental difficulties and differences. I am based in Tooting and my two associates are across Surrey and SW London.

[MelissaH]

I really recommend Elaine Halligan's book My Child's Different which charts Elaine's own journey with her severely dyslexic son (initially diagnosed with ASD) and shows how positive parenting methods can really help children who are different in many ways.

[MamaFofa]

I’ve pm’ed you. I’m also concerned for my own little one and wonder what your advice and next steps would be. Appreciate any advice you can provide.

[StormontRoad]

ABA saved our son.  He started showing symptoms at three and a half, and quickly regressed from normal development to non communication and troubling behaviours.  We put a massively intensive programme in place - 6 hours a day, 6 days a week - for three years until he was able to attend a special needs placement at Smallwood Primary, with support.  We fought long and hard with Wandsworth to get him statemented, but once that had been achieved, the borough not only paid for part of the ABA costs (about 50%) but he was supported throughout his education - even when part of that was outside Wandsworth.  He has just turned 27, and was recently awarded a 2.1 Masters in Photography from Goldsmiths College.  It's been a long hard road, but he is fantastic and we couldn't be more proud of him.

We were at the early development stage of ABA therapies and there may be other methods that I don't know about, but I cannot emphasise enough the importance of early intervention.  My non-scientific impression is that the autistic brain starts to scramble its connections, and needs to be re-wired back to normal - almost like  a stroke victim.

I really feel for you and hope you can get a clear diagnosis and find a route through this.  Remember to care for yourself too, and I'm happy to expand on my experience if you need more details.

[Bunnypigeon1]

Hello, I was hoping I could jump into this boat and ask a related question. We are in a similar situation and have been told to try and get a private diagnosis and then obtain an NHS diagnosis as the NHS pathway can be accelerated with a previous private diagnosis. Has anyone used a good private diagnostic service that they would recommend?

[Dudley]

@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.

[2009Kat]

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.

[Bunnypigeon1]

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....

[2009Kat]

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

[Dudley]

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.

[2009Kat]

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!

[ronich]

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

[mum99]

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.