Questions about the ASD diagnosis procedure

[MabelBee]

I am worried about a recent thread about the length of time it has taken others to get a diagnosis for their children.

I have twin girls who turned 2 at the beginning of September and have known that Twin2 was different since they were 7 months old. We got our referral to the community paediatrician at 16 months and saw him at 18 months for developmental delays as she was not walking or babbling at that stage. Since then we have had referrals to audiology, SALT, portage and a dietician. The only regular input we have at the moment is portage who come to the house or see us at a sensory room weekly.

Today we have had confirmation about a 2 day assessment at the child development centre at the beginning of next year. I had hoped that we would have a diagnosis after that assessment but is that not how it works? Why are other people waiting until 6 or 8 years old for a diagnosis? What happens after the CDC if we don't get a one?

Is this the same process that everyone goes through? And how does it compare pace wise? Should I be pushing for things to happen faster? Is there anything I am missing?

I don't know why I'm so obsessed with getting a diagnosis. I know it won't change anything. I just think maybe it means an end to this drifting.

Thanks. I know that's a lot of questions but I feel quite overwhelmed by this at the moment. We have a new 7 week old baby too and it's all a bit fragile right now. If I don't reply immediately it's because I have passed out with exhaustion but I will be back!

Bumping

Lots of children are diagnosed quite young mabel. If your cdc see enough evidence they will give a diagnosis.

I think many people come on here because they are having a really rough time and that could make it seem like most people have had to fight for diagnosis.

There are positive stories out there and even though I was one of the had to fight for it group, diagnosis has been very beneficial for us. As has coming on this board. I have gained more knowledge about the SN world from here than anywhere else.

Good luck

My DS wasn't diagnosed until 5, but that was because we didn't suspect there was anything wrong until he started school. He didn't have any developmental delays at all, just terrible behavioural problems.

For us it was a fairly rapid process (about 6mths) but it really did help to have something on paper. I can say "He has ASD" and psychologically, that has really helped me.

I have always pushed for a diagnosis. The thing with my son is that he is complex. He is clearly not right but does not tick enough boxes for any clear diagnosis. I am being told they want to see how he progresses. Also I can't for sure what's wrong with him. Now he has seen ot it's becoming more clear. He does not tick enough boxes for anything but he's ticking lots of boxes for lots of things. So is not very clearly autistic or not clearly got ADHD.

I can see why his dx is taking years. It's now that he is at school they seem to ignore symptoms. He has always been under a good doctor. He is very very delayed in all areas of life. I do want a diagnosis. But not any old diagnosis. I always thought he had asd but time is showing he has probably has SPd dyspraxia language delay global development delay and asd. So it's now what is that main diagnosis. So for ds it's the complexity

Oh yes - and shit provision from his hv and nursary who played every one of my concerns down

Mabel you seem to have things in hand here. In our case, it was simply a case of mum pushing for assessments and diagnosis.

The diagnosis gives you a lot - It helps with DLA for example

Do you have a hunch for what the issues might be? If yes, I would assume I have the diagnosis and start treating them.

You can start the statutory assessment anytime (even when they are a day old). I would start it and attach the diagnosis once you have it.

I would also start as much earlu intervention as physically and financially possible.

A lot of people do biomedical(supplementation with vitamins and minerals + pharma) too.

Once my son was seen by the community paed the diagnosis was rapid.

If he had been referred to them at a younger age I expect his diagnosis would have been earlier.

You are on the right track, so I doubt that you will wait as long as I did [8 yrs old]

I understand why you are keen for a diagnosis. It changes nothing, but it does confirm your thoughts that something is not 'right' and knowing why things are the way they are can help to get your head around things.

Yes a diagnosis helps you to access support via DLA and other services.

My eldest got his formal dx at 2.5 and my youngest got his at 3.

I don't recall that it was particularly lengthy, with my eldest it was practically one look and yup, he's got autism.

My youngest was more speedy than perhaps he otherwise would have been because it was my eldest's home visiting teacher who had been unofficially getting a look at him for some time and so there was her input.

I think that in cases like theirs where it's something that hits you in the face the second you met them it is probably a quicker thing than perhaps those that need more assessment and observation to build up a picture.

I think what I'm waffling on about is it will be a totally difference experience and timescale depending on the individual child and how they present.

Mabel, it varies from one dc to the next as each circumstance is different. Getting referred and not fobbed off seems to be a big hurdle.

Our experience was that once we got referred by the GP (who was sceptical to say the least) it was pretty straightforward ...8 months from referral we got diagnosis of AS and ADHD . It took 3 months to get to see the Dev paed and then 5 month wait to see CAMHS who do the diagnosing in our area. DS presents as a 'text book case' according to the consultant for both ADHD and AS so that means the diagnosis was fast.

Also DH attended all the appointments once referred...and if both parents are expressing concern they seem to take it more seriously as it cant be a neurotic mother issue.

The biggest delay was us really....it took a long time to realise and accept that DS development was not in line with his peers (not just emotionally sensitive, strong willed and over gregarious), that we were doing a lot more than other parents to keep DS safe, making compromises and working around his difficulties, and that we needed a lot more support and help for him and us which then led us to seek diagnosis. DS is 6.5.
With hindsight we probably could have been referred when DS was still in pre-school and got a diagnosis.

Good luck, hope it goes smoothly for you.

Thanks all. Feeling more hopeful now... It just all sounds so horrendous reading this board. Thanks for the tips about supplements which is something I keep forgetting to look into.

As for what happens after diagnosis and with education, well I just can't look at the bigger picture yet. I can only focus on the diagnosis hurdle which might pale in comparison to the rest of it.

Mabel as I have said before my dd was referred at 2.6 and diGnosed with autism at 2 yr 10 months .we were then told about units and sp sch which I looked at and she started at a spsch early years in sept .it doesn't have to be bad

Yes one step at a time, or you will go mad anyone thinking too far ahead

We got diagnosis after the 2 day assessment, in our area they give it on the 2nd day - unless for some reason they aren't sure maybe? if its clear, they will tell you. My ds2 was dx at 2 years old. I think the reason people don't get dx til older may be in some cases that it hasn't been picked up to get them in the system early in the first place? My 5 year old is waiting for a diagnosis too, because he would be much higher functioning it wasn't picked up early

What is statutory assessment and how do we go about starting it?

Statutory assessment is the process of gathering information which will hopefully lead to a statement of special educational needs being issued . If you want your dd to attend a sp sch or unit she will need to have one . Other people know a lot more about the process than me hope that has helped