How soon did you push for an ASD/AS diagnosis?

[Eloise73]

Hi

My husband and I are kinda going a bit crazy trying to decide if we should be pushing harder for a diagnosis for our only daughter. She just turned 2.5 and is currently getting occupational therapy and soon to start SALT on the NHS.

For a bit of background: I have suspected our daughter had a few autistic tendencies when she was 9/10 months, mostly because she wouldn't look us in the eyes when she was a baby. She wasn't pointing at 12-15 months and had very limited speech at 18 months (maybe only 5 or 6 words). We saw Dr Nackasha who is a great developmental paediatrician and he said he couldn't diagnose her just from what he'd seen. We started private SALT and OT where we found out she had sensory issues. We did this for around 6 months but stopped as we couldn't afford it anymore and we felt they were only doing the same things we did at home.

Fast forward one year. Our daughter has changed a lot. She is much happier, knows hundreds of words but is still language delayed (only says a few phrases but mostly one word statement/requests). She seems to have a huge capacity for memorisation, she can count to 40 forward and back (she loves numbers), knows her alphabet, colours, shapes, can do puzzles and loves to sing and dance. Most importantly she loves meeting new people, has great eye contact with everyone and loves her playgroups and is not afraid of being around other kids although she is still not keen on being touched by other kids unless its on her terms.

But she still is not communicating and on her Peabody assessment from the OT she came out as delayed in auditory processing. The OT suspects Aspergers although I thought you had to be quite advanced in communication/talking to have that? She also thinks if she does have it it is quite mild and that perhaps 'labelling' her is not necessary. She also said that all the support she is getting now would not change with a diagnosis as they want to help the deficiencies and not the 'disorder'.

Perhaps we are being too overly optimistic or head in the sand about this, i'm not sure but I agonise it every day and am feeling so down about making the wrong decision. Not knowing is very difficult, especially when we know our daughter is not NT. But is pushing for a label now too soon? If we ask for it we could have her assessed by a multi-agency team probably in the Fall/around her 3rd birthday. I would love to get your advice and hear what those of you who have/had toddlers you suspected of having ASD/AS did.

Thanks and sorry this was so long!

Are you in the UK?

Advice will differ here but hopefully people will explain their reasons.

For me a diagnosis isn't important, but usually if you want any clout with schools you need to have professional backing, which means a dx.

I knew fairly early that the area I am in fails children with autism, and that I am not in a financial position to make up the shortfall, and even if I was, schools were unlikely to work with me.

My county don't do anything unless they absolutely have to, and so a dx was the beginning of showing them they 'had' to.

hth

Yes, we live in Surrey and so far we've had tremendous support from the NHS and the private stuff we've done has been good too but very expensive. Just wish we could have continued with the private.

I don't actually know what the schools are like here for kids with ASD/AS, how could I find that out?

I have ds now 15 who was first seen by a paed at 2 and a half because of GP's reluctance to refer. At ds's first appointment paed asked what I thought was wrong and I said autism, he agreed and referred ds for an MDA he was diagnosed with moderate autism just six months later.
with dd now 7 she was referred to ds's paed at 13 months after a sudden loss of skills.She was seen at 17 months and the paed ordered chromosome tests and screening for metabolic disorders. When they came back clear he referred dd for an MDA and dd got her diagnosis of moderate to severe autism a week after her second birthday.
For me I didn't have to push at all and from their first appointments the paed made no secret of the fact he suspected autism but I would say that the autism was pretty obvious with both of them.

Eloise In Surrey I would get a dx unless you can afford to opt out of the system completely. There are some good schools for aspergers but you'll never get in them without a statement and you are unlikely to get a statement without a dx.

Why don't you give SOS SEN a call on their helpline. They are based in surrey and know the authority inside out and might be able to advise.

Thank you both for your advice.

asdx2: I probably screwed up my title when I said should we 'push' for a diagnosis, I guess people are reading, quite rightly, that we're not getting the support, I should have said should be press ahead because we were offered a multi agency 2 day assessment just after our daughter turned 2 but because she was improving at that time at such a rapid rate we chose to postpone it. Now its a matter of choosing whether or not to jump back in to the queue for that to happen. But you say your doctors told you what they suspected, our health visitor says she can't tell and thinks perhaps our dd is choosing a lot of her behaviour, OT said maybe aspergers and even that comment was like pulling teeth, paed said he couldn't diagnose, nobody seems willing to commit really, very frustrating.

ThickyStarlight: What is SOS SEN? I mentioned about statementing to OT and she said that that was for more severely affected children and that hopefully our dd wouldn't need a huge amount of extra support but how can they know what she'll be like in school?

So does this mean if dd has asd/as she will have to go to a special school? Is that generally what happens?

Am starting to think not pressing for a diagnosis is probably not a good idea...will discuss with dh tomorrow (as he's asleep now on the sofa snoring for England...!)

Google SOS SEN. They are predominately for people who are going through various systems but they sure know a lot about Surrey.

Pretty much anyone with a dx of an ASD can get a statement because MS schools aren't very well geared up to cope with them. Aspergers isn't being faded out so you probably won't get a diagnosis of that and it is actually better if you don't.

I'm sorry. I know it is a really hard decision and no-one here will really be able to tell you what to do.

My ds got a verbal dx at 2years 3 months. It was important to us to get it because we wanted a statement and then for the LA to fund ABA.

High functioning children don't usually go to a state-run Special School because they are academically too bright. However, it doesn't mean that all mainstream schools will be able to meet their needs. You'll need to do some research in your area. that is why I suggested you called the helpline.

Sorry did you mean Aspergers is being faded out? I'm not sure I understood that statement. Why do you think it would be better to not get that diagnosis of Aspergers?

I will speak to SOS SEN tomorrow. When I first suspected autism I read up on ABA but realised pretty quick that we could not afford to do it at the levels they recommend (30-40 hours a week). How many hours do you get funded for ABA? That's wonderful that you were able to get that!

Sorry for all the questions but you seem 100 times more knowledgeable than most people i've spoken to both privately and on the NHS! I'm very grateful, thanks

My 2 cents worth...

It sound like your child will fall in the more mild end of the spectrum. Don't worry about schools yet, you'll have ages to do that. She'll almost certainly go to a regular school. She might eventually get a statement, but that could be for anything, and doesn't necessarily mean she needs a lot of extra support. I think really don't worry about all of this for another 2 years. Also by then you'll know a lot more about her and her strengths and weaknesses.

As for a dx. I think definately get one, but I'm not sure at this more mild end of the spectrum if it matters if you get it know or wait a year or so. In another year things might be more obvious and so the dx easier to get. However if you think you'd be missing out on help in the mean time start now....

My son, with very mild aspergers, didn't get a dx till 9. And I don't think it really mattered. With hindsight a dx would have been helpful to us when he was 6.

But that's just my experience. I think the most important thing is actually to look after yourself. So if the stress and worry of whether to push for a dx or not is eating you up - then go for one now so that you can reduce at least that stress.

There you go. I've contradicted myself in a sonle post.

Eloise Aspergers as a diagnosis is being faded out in favour of the more general 'ASD' diagnosis, especially for young children because they can change so quickly.

The ABA path isn't an easy one but it isn't true that you need to do 30-40 hours. In fact since time is on your side I would investigate what you CAN afford. With practise it becomes your parenting style and that is how you clock up the hours. Where you might need to spend money is on getting yourself trained. There are an increasing number of independent consultants out there now who focus on empowering the parent and write programmes for as much or as little as you are able to do. You could employ someone to do a few hours a week on top, or not. There are also an increasing number of cowboys though promising all kinds of 'cures' so watch out.

This person is someone that some of us use here (who is a specialist in 'ASD' in preschool years, NOT an ABA consultant) who is very generous with her time and can talk to you about things you can do at home. She helps you to put together a programme that includes ABA but that you can do yourself.

The funding path is the path of misery however. You will almost certainly need to go to tribunal (or get close) and so you'll need to start collecting evidence right away of Surrey failing your child and start a programme that you fund yourself to collect evidence that your approach is the only one that works for your child. You'll therefore need to spend a bit more money, and then money on expert assessments and then money on the tribunal. The minium you'll have to fund for is about 8months. These cases 'usually' win however.

Please continue to ask as many questions as you want to, and start as many new threads. I know what I know, but others know lots of different things and between us we can probably give you a good picture of your options.

Don't let anyone tell you that it is too early to start working with your child. The earlier, the better the prognosis.

Thing is though Liz is that all children with asd have it mild when they are 2.5 as the gap between them and their peers is small.

As they get older however, without the right support that gap will get bigger and you will have missed an opportunity to intervene and prevent it. The job will then be harder work.

I would also advise getting a diagnosis sooner rather than later if you believe that your daughter may be on the spectrum.

Are you seeing a Paediatrician through the NHS? He or she can diagnose, or make a referral for a multi-disciplinary assessment. A Paed may be willing to diagnose 1:1, with no need for a full-on assessment, but different Paeds do things differently! You can pay for a private diagnosis, but NHS diagnoses do hold more weight with local education authorities and schools.

A diagnosis invariably makes it easier (not easy, but easier) to get statutory assessment / a statement and/or any other funded support that your child might require later on down the line, should you be planning to educate her at a state school.

Good luck.

We see our paediatrician privately but he put he is part of the NHS multi-agency assessment group that decides which kids to see at White Lodge in Chertsey. Her OT is now NHS (and she's great!) and she is on a waiting list for speech therapy. We did SALT privately at first because the first NHS speech therapist we had we did not like at all and she stuck her in a group with 2 older boys who kept coming up to her and touching her etc and she had very strong sensory issues last year - these are now thankfully much better.

Dr Nackasha has pretty much said he won't diagnose and that a formal assessment will be better and that he isn't seeing enough there to make a formal 1:1 diagnosis.

I can't really complain too much about the NHS support we've had so far but its been over a year now and despite wishful thinking and tremendous prayer on our part this is obviously not a 'blip' or something she will outgrow (you'd be amazed at how many professionals told us this - well, maybe you wouldn't be amazed but still!).

I think I may write to the woman at White Lodge who runs the assessments and ask that our daughter be put into the next waiting list for assessment hopefully before Christmas.

You guys really are brilliant. It's been a very hard time for us and we feel quite lonely with this even though we have very supportive friends and family its still not the same as talking to someone who is going through this or has been through this. Having other families to talk to would be a huge help and I can see mumsnet is going to be a huge help

I think the thing to bear in mind is that a diagnosis of autism doesn't necessarily explain your daughter any better than you could - it's just a group of professionals giving their opinion, and this opinion may lead to funding for your daughter.

It will always be a subjective opinion - it's not like she will suddenly reach a stage where they can do a blood test.

Slightly on a tangent, I am getting the impression that funding is very much tied to education. I could be wrong, but there doesn't seem to be much funding for therapy (OT or other?), and funding for education seems to depend on the support the teacher will need to have your child in their class, rather than the support that your child will need to reach their full potential. Perhaps this is an overly negative viewpoint, but might be a reason to plan your campaign sooner rather than later.

Just to chip in we got dx at 2.5 our son regressed so obvious dx. to be totally honest the dx did not bring much in the way of support - well in theory we got an autism outreach service and SALT but neither have been very good quality & termly at best. We see the paed every 4 months - now extended to 6 months but he just listens to us moan about the terrible services, he can't do anything. We don't get OT.

Once we realised how poor services were we started ABA. Initially we did this ourselves just paying for a supervisor which cost £400 a month and we did 20 hours a week. It was worth doing because it gave us a way of teaching him - he has moderate autism but bright. After about 6 months we were totally burnt out and employed a tutor for 5 hours. We also now have a volunteer who does 5 hours a week. Sometimes you can recruit volunteers from local universities.

We were able to show progress with ABA which the LA services were not showing and applied early on (before starting ABA) for a statement of special educational needs. LA have fought us all the way and we go to tribunal in Autumn. We will be broke by the time we get there but hope to win an ABA package funded by LA.

You can't get ABA without doing it and proving it works for your child.

Like Star it has been a horrific experience dealing with LA in fact more stressful than the dx.

You can get some extra funds by applying for everything you are entitled to including disability living allowance (you can get this without a dx but more likely with - Cerebra website has good guide to how to word things from ASD perspective). If you get higher (?middle) rate DLA you can apply for carers allowance if you earn less than £90 a week after tax, nat insurance and childcare costs irrespective of what your partner earns. You also get an extra amount of tax credits for disability - although how long this will last with new govt is hard to say.

PEACH, Autism Partnership and Treehouse websites are good places to start to find out about ABA.

AP have a social skills workshop for £15 coming up in June in London you might find interesting.

Surrey has an active National Autistic Society branch I think. It would be worth finding out about local pre schools / schools with a good reputation for ASD from your local branch / other parents. National NAS website has details of workshops and courses. Schools are usually asked to put in first 20 hours of support themselves from budget they are given but how this will work with proposals for new academies is unclear. Mostly support is given in terms of hours of 1:1 aide, they can be great or useless. Training in ASD for aide will probably be a days course if you are lucky. They will not be expert in teaching social skills etc. Again there should be some autism outreach support or similar who will advise school / nursery - quality varies.

I cannot honestly say my son has benefitted from services we have received mostly they have been useless but by trying and failing with them we will hopefully be able to show he needs funding for something more specialist.

What I would say is don't underestimate the amount of help even a child who is mildly affected will need. ASD is more subtle in girls at that age and I hear that they can be more social so disability can be more hidden; but it will become more apparent as she goes into school because girls are typically much more articulate, more emotional thinkers, play more imaginative games and their friendships more complex with boys (thats a terrible generalisation but you know what I mean). Often higher functioning children need more not less help as severely affected children won't need to grasp the intricate nature of playground games, teasing, friendships etc its actually those who are more able to access mainstream that need more help to fit in and perhaps are more aware that they are different.

Behavioural (ABA based) early intervention is proven to be effective especially for younger children so delaying intervention is not a good idea.

Other options are more play based developmental approaches eg Floortime - there is a lady in London who is Floortime trained here but there is little proven evidence compared to ABA and a developmental parent training research project (Pre school Autism Communication Trial) that just finished didn't show good results. But as a lower cost option it might be worth exploring. Sometimes you have to go and meet lots of people for free consultations to decide which way to go.

Overall we needed the diagnosis to get to tribunal. It is the first step in trying to get decent services. Without it getting support is even harder. In fact in my area you can't even get to see an autism teacher without a dx.

Your daughters interests sound identical to my son - although he is not social at all - he has the whole letter, shapes, memory, number thing going on. Its the more abstract parts of life he struggles with.

Thanks everyone.

Agnes, you're a star, thanks so much

Hi, dd2 was diagnosed at the age of 3, she was referred by our GP at the age of 2 after being examined and apparently reacting differently then most children (dd2 was non responsive), she also had no speech. I think the fact we had dd1 with a dx of Aspergers helped as the GP understood that it can often run in the family (so we were sure dd2 was also on the spectrum). At the age of 2.5 dd2 was non responsive to voices, would not respond to her name, was non-verbal, poor eye contact and spent most of the time with her hands over her ears. She's now 4 and is talking but still very delayed, responds to simple commands, can now tell us her name when asked and rarely covers her ears. Dd2 was given SALT, Music therapy and ABA before we even had a dx so to us he dx was not important. We were lucky that dd2 was referred to a sn nursery that had training in ABA and floor time (so we did not have to go private).

Eloise,

Re your comment:-

"I mentioned about statementing to OT and she said that that was for more severely affected children"

I tell you now that OT was talking bullocks!!. Its all designed to put parents off from applying. Do not believe such naysayers. I would always apply for a Statement to help with schooling, have seen too many good intelligent children suffer badly at school due to their additional needs not being met.

I would also seek a diagnosis, that opens more doors as well. See a "label" actually as a signpost to getting more help, its not a stigma. Also early intervention is vitally important, its helped my son no end.

Never forget either that you (her parents) are your child's best - AND ONLY - advocates.

I'm not a 'statment at all costs' gal, but by bejeezies it is easier to get one now before the school start pretending that he hasn't any needs!

she she. so sorry

Eloise,

You must do whatever will make you and your husband feel strong and united and energised for the ongoing help she needs.

When we made our decision 18 months ago, I knew it was right for us because I stopped losing sleep. I then had more energy to put into working with DS2 and DH was happier and also felt more able to put more work in. I know one day I might have to change track, and that's fine.

Do you have a sense of what would make you and your husband sleep better and feel more like you've taken control?

Agree with that wise Lingle. Don't put the responsibility of your ds in the hands of anyone else. They have neither the means or the inclination to work as hard as you will for her benefit. Accept things that are helping. Reject things that are not. Don't ever be fooled that input is the same thing as outcomes.

Keep that in the front of your mind and you -are well-placed to help her!

I really am so grateful and overwhelmed at the support you guys have given me and the wonderful advice, its helped so much!

After a long chat with DH we've decided its best to push for an assessment. I contacted the woman at White Lodge in Chertsey and they are going to make a decision this month about whether to assess her or not. If they decide to put it on hold we may go down the BIBIC route.

Marne: do you live in the South East? I'd love for our daughter to go to a nursery that is familiar with ABA and Floortime, that's brilliant.

You know, it seems absolutely bonkers to have to jump through all these hoops and push so hard to get people to tell you something in your heart of hearts you never want to hear

Lingle I think we would sleep better at night if we knew everything that was going on and we knew the best way to support our DD.

Attila I need to remember that, we are her advocates, that's a great way to look at it and is very true.

ThickyStarlight I could use some of what you're having tonight!!! ;)

Thank you all again xx