Diagnosis Help

[guyshahar]

There seems to be a lot written in this forum about diagnosis, and it seems to be a long, difficult and painful journey for many. We are just at the start of this. It looks very much as if our 22 month old son has autism, and are just starting to have these experiences of doctors telling us they don't even think about referring anybody to anybody before 3 years and so on. We have fought, and got a referal for a hearing and speech test and an appointment with a community paediatrician (whatever that means) but it won't be for a few months - and these are crucial months when intervention could actually help.

Could somebody give us an entry level overview of the process to get a diagnosis? What will the paediatrician do for us, what will happen next and how long does a diagnosis take? If it is a very long time, or if they fight back because he is under 3, can this be speeded up by going to a private paediatrician? What would be the overall cost of this?

Is it important to get a paediatrician with clout who others will listen to? We were told it was, and tried to get an appointment with Gillian Baird, but our GP said that there have been recent changes to the NHS and she could only request a paediatrician from our area, and was no longer allowed to refer to a specialist outside the area that we ask for...

We are watching the situation detereorate every day, and all we are getting from doctors and health visitors are delaying tactics and disinterest... If we understand the process better, perhaps we will be able to make more progress....?

It may help to read about some of the scientific research which the diagnostic professionals work to. There is still a great deal of ongoing research regarding the understanding of the causes of autism, as well as the diagnostic criteria.
Identification and Evaluation of Children With Autism Spectrum Disorders
Autism Spectrum Disorders
Motor-auditory-visual integration: The role of the human mirror neuron system in communication and communication disorders

Not sure that a dx will actually help you much - very, very little is provided for free in the UK :(

From the NHS you should get portage, ot and salt..... Almost certainly not enough of any of it.

But things that really work, like ABA, you don't get on the NHS.............

So assume your boy has ASD, and start to decide what you are going to do about it.........

Don't worry about a dx. Keep pushing for it - but it won't bring you very much at all unfortunately :( (Besides much needed piece of mind)

Justa - so would you recommend getting a private dx to speed things up?

we only pushed dx because of DS starting Reception and we needed a statement for the placement I thought and still think its best for him.

Prior to even seeing anyone, even before SALT, I put an early intervention in place in terms of change of diet, lots of supplements, physical activities similar to OT exercises and picture cards similar to PECS so that DS starts using some meaningful language.

Indigo is right, you dont get much on the NHS or better said, it all depends where you live and what provision you get. I have waited for over a year for an allergy testing and blood analysis referral and if you know me you will know how pushy I can get where DS is concerned and if I hadnt done it privately I will still be waiting. Similarly, the retained reflexes therapy we did privately, OT raised some fine motor issues but DS rated at 92% dysfunction in a private clinic. And when I presented the NHS OT with the RRT plan she said it all made sense, she was trained in all that when worked in private practise and knew similar exercises if not the same but considering she worked for the NHS she had to follow the 'books'.

ABA also comes at a private expense. With SALT we never moved beyond the attention and listening groups so I have to stand up for myself and say all DS's success comes at a fee and effort covered by myself.

Our SENCO has told us that he will only get the help with a DX. The EP told us that a DX won't make any difference. They wonder why there is confusion!

I think it very much varies area to area and even from paediatrician to paediatrician in my experience. My dd got an autism diagnosis a week after her second birthday so it is possible and waiting until three isn't a requirement.
Dd saw a GP after a sudden regression around her first birthday. GP referred to paediatrician who we saw when she was fifteen months old. Paed took a developmental history and arranged sight and hearing tests, a chromosome check and screening for mitochondrial disorders and thyroid check.
Two months later all tests came back clear so Paed referred dd for a multi disciplinary assessment, she saw Child Psychologist, Occupational Therapist, SALT and had a six week placement at CDC nursery and was referred to the education service. Over the next six months she was assessed by everyone and the results given when she was just two and a statutory assessment started.
She had Early Years SSSEN input from two and a Statement of SEN by three giving full time support for her entry into nursery.
We are one of the lucky ones I think.

Hi again

Could someone please help me to understand what actually has to happen. We are not getting clear information from doctors, etc, and we don't know what processes we have to do.

Sadly, I do not understand most of the acronyms above, or know what a "Statement" is.

What we would really like is a clear, simple, entry-level understanding of what has to happen to get a diagnosis? What are the steps, etc. Then we will be able to understand better what the difficulties are in going through these steps.

Ben10isthespawnofthedevil

"Our SENCO has told us that he will only get the help with a DX. The EP told us that a DX won't make any difference. They wonder why there is confusion!"

This sounds like the diagnosis verses need discussion but being used by professionals.
The schools who provide the funding the SENCo will use to provide the required support will say that they will not provide the funding without a diagnosis, very political.
The medical or clinical view is that the support need will remain the same regardless of any official diagnosis of the cause of the condition or spectrum of possible causes of the support need.

I suppose you have to do you own investigations via the various leading research papers and research journals to understand their perspective, and be able to discuss issues in their terms.

Hi
It's very frustrating. Two things I would suggest: 1. Ring the Community paediatrician now (or their secretary) and ask them to tell you what the appointment is for, and what you can expect from it. Be persistent. 2. Ring the National Autistic Society helpline, to talk through your concerns.

Many of us have or hope to have a Statement of Special Educational Needs ("statement") which is a legally enforceable document, setting out the extra provisions the child needs to progress well at school. Ring the Education department of your local authority to find out how they handle statements. Not all children with ASD have statements.

Hope that helps.

asdx2 has explained the steps that usually happen, we also followed the same process to get to dx.

What I have learnt though is you dont have to wait for GP or HV to refer you to Speech and Language and paediatrician, you can refer yourself as a concerned parent.

contact your local parent partnership team they will talk you through everything includin what statment is: www.parentpartnership.org.uk/

It's difficult to advise because there doesn't appear to be a standard practise nationwide.
For us at under five a GP would refer to a Paediatrician at the Child Development Clinic.
The Paediatrician would refer to speech therapy, occupational therapy and the child psychologist as well as referring for sight and hearing tests.
At the Child Development Clinic nursery a child would be observed by health and education professionals.
Everyone would submit their findings, a meeting would be held to discuss and then a parent would be given a diagnosis if it was the result of the findings. Quite often being young though results might be inconclusive so you might get "autistic traits" or "global developmental delay" or "social and communication disorder" rather than a specific diagnosis.
A statement of special educational needs is a legal document (in England and Wales) describing a child's specific needs and detailing the support a school or nursery must provide to meet them.

A Statement is what specifies extra help your child will need at nursery and school.

The reason no one has said what happens to get a dx, as it varies.

In some places a paed does it, in some places CAMHS does it, in some places they use the ADOS test........

Also varies with age and severity......

Sorry, that is why people can't be more specific.

You are 'in the system', you are waiting for appointments. But no one can tell you what will happen, how many appointments you will need, who you'll see etc.

All I can keep on re-iterating is that the UK doesn't provide early interventions (or late interventions either)..... You have to do it and pay for it yourself. The dx from the paed will not bring interventions with it......

It might help you get into a SN nursery..... But your child is 22 months. You want to start doing things now, yourself, at home........

The system varies slightly from area to area. I'm a bit out of date ( Ds is 11 and diagnosed some years back but I remember that utter confusion at the system that seemed to not want to help at all!) In the early years it can be hard for the medics to be sure of the underlying condition - so there is a tendancy to wait ( and wait) and see.
The community paediatrician is usually the one that asks for other specialists for their assessments, checks and reviews the medical side, brings things together and makes the diagnosis if one is appropriate. Normally speech and language is assessed, sometimes movement/ control by the occupational therapist OT, hearing etc. In some areas there is a specialist assessment for children suspected to be on the spectrum - in others a child psychiatrist advises.
Statement means statement of educational need - a document written/commisioned by the education authority-that sets out ( after consulation with professionals) what is needed to support the child . HTH

Hi Guy, so sorry that you are going through this. Have to agree with the posters above.

Personally I would try and get a private dx but remain on the NHS one and state that the private is only a second opinion that came first.

A private dx makes it easier for you to get DLA which can help pay for a fraction of the assessments and intervention you might want to consider. I'm afraid that areas vary in support but 'generally' the picture for intervention is bleak and resource-starved run by staff who will not tell you this less you demand more of their already stretched resources/time.

TooOrangeyForCrows, how can we refer our son for the Speech/Language therapy? Who do we need to contact to do this? Is there a long and complicated process?

We have a referal for a community peadiatrician, but are still waiting for the appointment to come through and don't know who it will be with. Is there anything we can do on that front in the meantime?

Finally, I am told that some authorities recognise private diagnoses and others don't. How do I find out whether mine does or not (I live under the Hounslow area in case anyone happens to know...)

All authorities recognise private diagnoses (with the exception of dyslexia sometimes). But do hold onto your NHS as well so that they don't pretend they don't.

It took me four years to get a dx for my DS who is now 6. Nightmare but keep going. One thing I was told constantly was 'early intervention is the key'. I never stopped pushing for him and now he has a dx and a statement - 20hrs a week in school 1:1 support.

He has made really good progress but it takes time - things don't change overnight so don't panic x

we pushed and pushed and still got nowhere until ds became a problem at school then they miraculously seemed to believe every word I ever said took years so keep plugging no matter what the earlier if you can the better ( ds is asd moderate & dyspraxic) but as some are saying depends where you live if it actually means much generally its OT , Portage, SALT and some do get other kinds of therapies but few and far between only if your dc is classic autism or savant rather than AS or ASD as the spectrums so huge will you be given everything you really need for ds(how awful to have to suggest that the worse in the case of therapies ect the more help) ridiculous but IME is so true. And not always true about ALL authorities recognisng private dx as mine will frown upon it recognise it record it yes but ignore too it seems to happen a lot, of course if you can aford it in meantime all well and good but still where i live the LA will just not listen at all unless its their EP especially. i would read read read and keep records and look on here try therapies if you can aford them and tips like weighted blanket, epson salts, cod liver oil and anything else you see people suggest to see what works for you but as the others say the dx is a small part of it a lot can /should be done without it

Guyshahar - We trod a similar path to you. My DS was referred to a community peadiatrician when he was 20 months old. There was such a long wait for the appointment that I booked him in to see a private Specialist (Dr. Challis in London).

I kept our NHS appointment as I wanted him to remain in the system.

The benefit of seeing Dr. Challis was that she was able to refer DS for Speech and Language Therapy and EEG. I think these were both private referrals as I don't think she could refer to the NHS (my memory's escaping me).

We had the EEG done privately but couldn't afford the costs of SALT.

Eventually we saw the community Paed who, in all honesty, wasn't particularly helpful. It seemed that her role was to determine if onward referral to a consultant was necessary. She did so but only becuase I practically begged her in tears (she wrote in the referral letter that she was concerned for my state of mind roll eyes).

We were then referred to a Consultant with a special interest in Autism who we've seen every 6 months for the last 2 years or so. We still don't have a diagnosis but our specialist was able to put into place Portage,OT, Physio and SALT.

If it offers any reassurance at all our son was initially presenting as "very Autistic". At 21 months he did not walk, talk, point or wave. Partly due to the help we've received he is now a very happy 3 year old who still has some issues but recently "passed" an ADOS test (an ADOS is used to assess for Autism).

My Consultant's view all the way through was that 1 in 3 children will outgrow Autistic tendencies before the age of 3 so he didn't want to make a diagnosis before then. He did, however, say that until that time we would treat him as having Autism.

Hope some of this has helped...