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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

autism diagnosis

35 replies

Tanaka · 09/02/2021 18:13

Is anyone here also frustrated with the waiting list for a autism diagnosis. My 8year old son has been showing signs since he was 3 but my doctor dismissed it and told me it was too early even after I told him that his teacher had concerns. Now I have been on the waiting list since last year January. I am depressed now and just need support.

OP posts:
Mummypigisalwaysright · 09/02/2021 18:22

Where are you based? Can you find any local autism charities that may be able to help? We are trying to get a diagnosis for my 5 year old. Are you waiting for a referral to pediatrics? Does your son's school have a senco? Get them onside if possible, they may be able to help. Is your son showing disruptive behaviour at school or does he mask?

Mummypigisalwaysright · 09/02/2021 18:22

Pm me if you'd like some one to vent to or discuss Flowers

Sevensilverrings · 09/02/2021 18:26

We were similar.
Eventually, at 10, my son was diagnosed. I had a meeting, he had two meetings, and then they gave him a piece of paper about the meetings with his diagnosis at the bottom. No offer of services or any contact thereafter. They got more info from me than we ever got from them.
I don’t know what I thought would happen or change from that, but nothing really did. It was on his file for school, but to be honest more adaptations were made for his dyslexia (and we had to pay privately to have that diagnosis). He’s 18 now, and we still have to fight for anything. He’s had no help other than for his dyslexia, and that’s been poor. It might help him more to access support now he’s an adult, but I’m not getting my hopes up.
I think it’s a postcode lottery though, but even so, I’d try and use some of the time before he’s assessed to work out whats available, because it’s possibly no different to after his assessment and you could access it now.
Good luck to you, it’s a strange journey. I hope you and your son get the support you need.

Hankunamatata · 09/02/2021 18:28

Hate to be cynical but dont hold your breath about support even if you get a diagnosis. You would be better contacting asd charities and seeing of they can help

BlackeyedSusan · 09/02/2021 18:31

Yeah, I am sure the "here is everything you need to know until they is 16" really helped...when they was 4

Find out if you have a prediagnosis support system. We do here. (Diagnosis two)

Nowt for adults though. (Diagnosis three)

Waited 13-14 months for first,26 for second, 27 for third which is still ongoing.

Happycat1212 · 09/02/2021 18:32

Last year January? 😂 we’ve been waiting since August 2018 for my 8 year old to be diagnosed

LatentPhase · 09/02/2021 18:33

Agree with pp, diagnosis provides no extra support. All you will get is a piece of paper (important for the fight ahead, but not useful in and of itself). Instead seek support and like-minded peers for you and your ds in your area. There’s a SN board on here.

Good luck Flowers

Krook · 09/02/2021 18:38

I think a diagnosis is useful in terms of at least being entitled to the support at school. If you don't get it then you have grounds for complaint.I know it doesn't always work that way but you will have the evidence that he needs it on your side and in your favour.
Waiting times here are currently around 3 years. The only way to speed it up is to go privately, unfortunately.

Gliblet · 09/02/2021 18:47

Definitely try and contact local autism support charities - our County wide local charity has given us more help and guidance than anyone else.

There is a GP referral route, and a school referral route, but both have to be funneled via the community Paeds team and its then a waiting game for the assessment process to start.

One thing a lot of parents aren't told by anyone is that you can make a DLA and carers allowance claim without a diagnosis if you're finding you can't work or are facing other costs or hardship as a result of needing to provide additional support for your son.

PaquitaVariation · 09/02/2021 18:49

A diagnosis is unlikely to bring support. What support are you looking for in particular?

Stretchandsnap · 09/02/2021 18:51

March 2018 here for DD

Original poster
Tanaka · 09/02/2021 19:23

I am based in Kent and currently awaiting a paediatric referral.He attends a catholic school but they don't have experience,

OP posts:
Ellieboolou33 · 09/02/2021 19:35

Took me 3 years, dd is now 8, it took her locking herself in the school toilet and screaming she is going to kill herself before the school took any of my concerns seriously.
She had her assessment Monday and the consultant who saw her 2 years ago at the time said "there is nothing wrong with her"

Although a diagnosis won't change anything much, it gives the school funding to support her and I can stop thinking I'm the worst parent ever.

Ding123 · 09/02/2021 19:49

I've always suspected DC1 (11) has some sort of ASD, however never been taken seriously by school staff or GP. He had a breakdown last year during the first lockdown (around June). GP arranged some counselling sessions by a psychiatrist that started a month later carrying on until September. Psychiatrist picked up on possible ASD and did a referral for assessment. I heard from them in January and have had two appointments so far. We were told a diagnosis may take longer due to Covid as face to face assessments are necessary. In our case it took something drastic to happen to be taken seriously.

bigarse1 · 09/02/2021 19:55

We are in Kent and gave up and went private. We had twins that had to be in hospital for gastro issues, within an hour of them being in all staff were saying they were autistic. They weren't allowed to diagnose as they were the wrong department but all made their feelings clear and made referrals. Community paeds saw them on the back of that and said yep they were convinced too but they needed to go through the system and stuck them in a two year waiting list.
We sold anything we could, had no takeaways, meals out, days out or holidays and went private. Best thing we ever did.

Punxsutawney · 09/02/2021 20:01

It took about 18 months for Ds from referral to diagnosis. He was 15 though and his autism had been missed for a very long time. His problems were first mentioned by a teacher when he was 4 years old. So it actually took 11 years from it first being flagged to diagnosis. This has caused very significant, long term difficulties for him.

There was no support when Ds was diagnosed. A handout from the Paediatrician, that was it. Ds wasn't even invited to his own diagnosis appointment. I had to go home and tell him.

Watsername · 09/02/2021 20:03

Started process in year 2. DS is now in year 8. I think we’ve been forgotten.....

HelplessProcrastinator · 09/02/2021 20:21

I went to the GP listing my 6 year old DD’s problems. She got an ASD diagnosis 21 months later. We got a diagnosis letter and that was it. Not even some links to local or national groups. LEA communication and interaction mentioned a course for parents over 3 mornings and we picked up lots of local info on support from that. We have a couple of local FB groups that are useful for support and sharing good activities and days out etc. Diagnosis should allow better access to support at school (theoretically that should meet the needs of the child, not the diagnosis but this doesn’t seem to happen in practice). Additional funding at school only comes with an EHCP. A diagnosis will just be another draw on funds the school already has in the budget.

In our area diagnosis is through local hospital paediatrics at child development centre, or CAMHS if the child presents with MH issues before ASD is diagnosed. I was able to get melatonin for sleep issues prescribed and continence nurse support before a diagnosis was made.

I would recommend looking for local support groups, FB groups and read up on strategies to support your child while on the waiting list. As someone mentioned you can apply for DLA without a diagnosis. Good luck. You will need to do a lot of leg work yourself I’m afraid.

GreeboIsMySpiritAnimal · 09/02/2021 20:27

We went on the waiting list when DD was in Y2, she's in Y4 now and we're still waiting. Not even close to the top. Tbh she's now so good at masking I'm doubting we'll ever get a diagnosis.

binkyblinky · 09/02/2021 21:06

My son was diagnosed age 3 luckily. Have you looked into a private diagnosis?

Doimatter · 09/02/2021 21:12

My son has been having assessments since 2.5 years.big gaps between appointments though. He then got referred to communication clinic waited 18 months for that. We got to see peadatrition in a couple of weeks for diagnosis. Not sure what way will go. He's 6 in a couple months.

Original poster
Tanaka · 10/02/2021 09:45

It seems like right now all the support is accessed online,what then happens to people that do not have internet access. I am very anxious about this road about to embark on and with homeschooling,I am slowly losing it.I hardly have enough time to take care of myself mentally.You will not believe how long it took me to even start a discussion here and see what others are going through, I was always procrastinating.

OP posts:
danni0509 · 10/02/2021 09:51

@Tanaka what specific issues are you having with your ds? If you give us a bit more info (if you want to) we may be able to signpost you to relevant places

Happycat1212 · 10/02/2021 10:00

Can’t he go to school? My sons at school even without a diagnosis

TheYearOfSmallThings · 10/02/2021 10:00

Have you had confirmation since last January that your DC is still on a waiting list? I know things move slowly, but DS has had various SLT appointments, hearing tests, eye tests etc during the pandemic (and eventually ADOS). But before all this he got dropped off various lists, or referrals rejected without informing us etc.

If you haven't seen any progress I would ring to make sure you are still on track.