Development delays/ possible autism - poor response from NHS. What should we expect/ next steps?

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Hi, our DS (just 2) is increasingly showing several red flag signs of autism - lack of pointing, asking for things, poor eye contact, behind in speech. At the very least, he is developmentally delayed. We are obviously extremely concerned and were referred by our GP to the local Child Development Service.

The letter from our GP to the unit was considered at a meeting and we have now been referred to a SALT for assessment and offered access to the portage service. They also suggested contacting our HV and local children's centre.

My question is: should we not be seen by a consultant paediatrician on the NHS for them to make an assessment rather than his case being discussed without anyone seeing him? We feel that what we have been offered is very weak and the suggestions of seeing the HV and visiting Children's Centres for groups, to us, seems unbelievable. We weren't even referred to the portage service, just offered it if we choose. I had to be quite firm that we needed to see a SALT aswell. We have been told that he would not be assessed for autism until he is 3.

Is this right? If you were in our position, what would you be expecting? If you've been through a similar experience, what were you offered/ what did you do? We are very anxious to start helping our son asap - we don't want to lose a minute as we know the importance of early intervention.

Many thanks for your advice in advance

Dd got her autism diagnosis a week after her second birthday. How it happened for us was at thirteen months GP referred her to the paed who had given ds his diagnosis at three six years previously.Paed ordered chromosome testing and testing for metabolic disorders when they came back clear he referred dd for a multi disciplinary assessment and to education.
Every area differs though and that I think is half the problem as there doesn't seem to be a standard practise nationally.
I would say you are well within your rights to ask for a referral direct to a developmental paed.

Ds was showing red flags at his 2 yr check with HV. No talking, poor eye contact, world of his own, poor sleep - etc
HV referred ds for hearing test, SALT toddler group (there was a waiting list) and ref to development pead for a Ruth Griffiths Developmental Assessment.

It took about 6 months to get the appointment with the paed for the RG - it was obvious at that appointment ds had issues, paed asked me my opinion at the end and I mentioned my concerns about autism. He agreeded that ds was showing many traits but at that stage the dx was Global Development Delay to be followed up with blood test, tests for Fragile X, and referral to a paed qualified to assess for and diagnose autism. He was also referred to a developmental nursey at the hospital (waiting list again)

Over the next 16 months we had many consultations with the neuro paed and ds had his ADOS and dx of ASD and learning dificulties at 3 1/2. It was a long road and frustrating but it takes time.

I had a statement for DS before the diagnosis was confirmed and he started in a special school at 4. He has now had one term part time and been full time since Christmas - he is making great progress.

The process of getting a diagnosis, early help, statement etc is emotionally draining but worth putting in the effort. I can't stress enough the difference finding the right school makes. Reasearch, know your rights and stand firm when dealing with all agancies - try and keep your cool, don't scream and shout (even though you will feel like).

We were referred to a SALT and while we waited we also saw an independant salt. Once we saw the NHS SALT she made the referal to the Child Development Centre which I suspect carried more weight than a referal from a GP. We then saw a paediatrician for an an initial assessment to see whether or not a assessment twith the child development centre was appropriate. He agreed it was and we were seen fairly quickly after that and ds got his diagnosis.

If I were you I would ask the SALT to make another referal when you see her and in the mean time make contact with portage, children's centre and HV. Ask them to lend support to your referal. I think it helped us that we were engaged with lots of different services and they were all supporting our concerns.

It took nine months from being referred to a SALT to getting a diagnosis.

Oh I agree with Leoni since ds's diagnosis ALL health proffessionals have dropped off the face of the earth.

Same here there are no health professionals involved with dd or ds come to that. Ds gets SALT and OT in his independent specialist school, dd hasn't seen a SALT, OT in the last five years. We have a statement and a very good school but I am the person advising the school rather than any professional.
Around here it is very much a case of here's a diagnosis.... goodbye. If you are lucky you might get a leaflet but you are very much responsible for not only caring for your child but also finding support and researching and managing therapies.

No follow up is this area either - once you have the diagnosis you are left to get on with it. A few familys get support from the ASD outreach worker but her caseload is huge - same with the autism outreach teacher although they have just advertised for an extra one.

Ds gets SALT in school (she is based there) and is under the paed at school. There is a nurse at school who can refer to other agancies where necessary but access to physio and OT for a lot of the kids in the school is very poor - and some of the kids are profoundly disabled. The resources are not provided by the NHS.

I think what we are saying is that yes you can diagnose ASD under 3 and many of us got dx under 3, but it would probably not bring anything extra in terms of help. Portage+SALT or autism outreach+SALT is basically all that is on offer for under 4's. You may get some 1: support at a mainstream nursery assuming you would want a nursery place.

Many services only want to work (and only resourced to work) with nurseries and schools to give them 'advice' they do not want to work with the family or child directly.

My child was dx at 2.5 with massive regression and moderate-severe autism. He lost 18 months worth of skills. They sent an autism teacher to his nursery once a term who told the nursery to use symbols, buy a white pop up tent, take anything bright off the walls and draw lines on the floor to teach him not to escape out the door. That was it. No programmes, no strategies, no demonstration of techniques. She did not even interact with my child. Ditto SALT came a few times and said hold things by your face so he looks at you, use one word instructions, roll a ball back and forth. That was it. No targets, no programmes, no proper assessment. That was his provision for 18 months. needless to say he made zero progress.

Portage is worth doing (we were refused portage as you could not have both portage and autism outreach - so here people delay getting a autism dx so they do not lose portage!).

In terms of autism provision you will either need to teach yourself or go private, at least until you can get into a specialist nursery or programme.

Look at Hanen More than Words book (Wilmslow best price) which is good easy read for where to start with strategies. Then read up on ABA (applied behaviour analysis), Floortime, RDI, Early Denver etc. In USA ABA is the standard approach used and modern ABA is becoming more mixed with play based approaches eg verbal behaviour, Early Denver, PRT. You will find out more reading websites of US autism centres / Paediatricians than UK ones.

Find out about specialist schools, nurseries, ASD or speech units near you (State or private) and apply now for a statement of SEN. We applied at 2.7 and got a final statement after appeal at 3.3 which we then had to appeal as it was for mainstream and Ed Psych had advised specialist - we finally won ASD specific provision at Tribunal at 3.11.

If you can afford private therapy e.g. SALT or applied behaviour analysis then do that. We started ABA after 6 months of waiting for someone to do something. We were told by the SEN officer at the council 'its just autism, we would expect him not to speak or socialise, thats not enough for specialist support he would need to have a feeding tube as well'! They just tried to drag the process out until they could dump all responsibility on a mainstream school or nursery.

Just because health professionals can diagnose at 2 or 3 does not mean local councils have changed their provision to accommodate younger children. Most councils still have services geared at over 5's and little to offer younger children.

And NHS SALT has been useless. Most NHS SALTS have one day training on autism, they know how to teach speech sounds but they don't know how to motivate a child to speak i.e. the autism bit of communication. So often its a dead loss.

You could look at something like PECS - I went on a PECS course early on and found that useful (Look up Pyramid PECS for workshops).

You should push for a diagnosis but it will not in itself bring any additional help. The best way to access specialist provision is to apply for a Statement and prepare yourself to appeal at each stage you are turned down - which at 2 will be every stage probably.

You can also self refer to an educational psychologist for advice on appropriate provision so get on this list as well.

For Statements of SEN look at IPSEA. Just send off the standard letter. They will turn down the request for assessment as premature - so you appeal - then the council has to gather evidence to defend the appeal and show the tribunal your child's needs are being met - so at that point they will need to send in autism teachers / early years specialist teachers and Ed Psychs + get advice from a paediatrician / SALT.

Find out if you are eligible for legal aid (legal aid website) if you have to go to appeal - if so legal aid will pay for private reports in an appeal

It won't make you popular applying now - you will be told you are jumping the gun and should just wait until all these wonderful services come in. Trust me, don't listen and don't wait. The way it was described to me was that this amazing swat team was going to come in and provide all this support. Then all we got was advice you could read yourself from a £5.99 paperback on autism and a tent. When we expressed surprise that 'this was it' we were vilified, bullied and labelled obstructive and dishonest in the hope a Tribunal would dismiss our evidence.

My son made more progress in his first week of ABA than he did in a year of the State provision. Early intervention does make a big difference and whatever you can learn to do yourself or pay someone specialist to teach you will be worth 100 times what a diagnosis will bring.