Autism assessment waiting list. Should I just go private?

[Burritobowl84]

So my 2 year old son seems to be displaying a lot of the classic signs of autism. He is the sweetest, loveliest little boy, and although he obviously struggles with communication he is so affectionate and loving and a pleasure to be around 🥰

He seemed to be developing normally for the first year of his life, was saying a few simple words and following along to actions to nursery rhymes by his first birthday. But then his speech and general communication seemed to grind to a halt, in fact I’d say he seems to have gone backwards.

He is exactly 2 years and 6 months old now. He doesn’t speak at all, he just babbles. He doesn’t make any attempt to communicate with us, no pointing to things or gesturing in general. He looks at our face if he’s sat on our lap and we’re singing or playing peekaboo with him, and he will laugh and squeal and seems to enjoy it. However at any other time it is very difficult to get his attention, if he’s playing with his toys he is so focused! He likes to order his bricks/figures etc and gets very upset if we pick him up and take him away from his toys when he’s in the middle of ordering them, and gets very upset if we move a toy from the place he has put it in. He doesn’t respond to his name, we have had him checked out by an audiologist who had confirmed his hearing is fine, which we did kinda think anyway as her seems to enjoy music. He just doesn’t respond to his name or any other attempts to communicate with him.

There’s a few other little habits he has and behaviour that he displays that would suggest that he may have autism, but it’s hard to know as some of this stuff could also just be normal 2 year old stuff???

Anyway, he was seeing a speech therapist for a period of time. The speech therapist he was seeing also worked in a school for children with additional/special needs. I voiced my concern to her about my son potentially having autism, she said she would refer him to an autism specialist to get the ball rolling, however she didn’t want me to worry too much as at two years old it can be difficult to tell, and her referring him didn’t indefinitely mean he was autistic, however she wouldn’t have referred him if she didn’t think he was displaying signs of autism in her opinion.

So I had some paperwork in the post, questionnaires to fill out etc, sent them off. So we are on the waiting list with the NHS, however both my health visitor and the speech therapist had both advised me it could take years for my son to be seen on the NHS. I was also told the earlier the diagnosis the better the outcome for children with autism.

So is it worthwhile going private? My SIL paid for her son who has recently been diagnosed with autism to be seen privately. My nephew was seen within a couple of months. He was diagnosed very quickly, however he is 7 years old, so I’d imagine it’s far easier to diagnose a 7 year old as opposed to a 2 year old. SIL also paid £1000.

We can’t really afford to go private, we have a lot of existing debt already, and although a £1000 isn’t a lot to some people it’s a fortune to us, however obviously for our son we would find the money if it’s gonna make a huge difference. However if we spend a grand we don’t have only to be told ‘well he’s only 2, he probably does have autism but we can’t say indefinitely’ then it’s a waste of time and money we don’t have. Anyone else gone down the private route with a child as young as ours? Are they able to diagnose a child so young? And if so what treatment options are available?

There is no treatment for autism. You have said you can’t afford it and it’s really not worth getting into debt for.

He is still only little, you already have SALT in place for him and are doing what you can to help him develop to his ability.

My son is 2 years 7 months. He was privately assessed at 2 by a fantastic children's psychologist as we were told 18m wait on NHS and they weren't giving us access to any services. As soon as we got the diagnosis suddenly everything was exbadited and we got portage, referral to speech and language and occupational therapy BUT they wouldn't accept the private diagnosis and insisted on another nhs assessment. However this happened in 5 months so far less wait than originally forecast, I felt like we were put to front of queue. And very quickly the NHS doctor agreed with everything that was in the extensive private report.

So a tricky one... I would certainly check if your local borough will even accept the private one before pursuing it and secondly... What additionally do you think you will get with the diagnosis? For us nothing much has changed other than we are working on Education plan for him. I do feel like they talk a lot about early intenvention but actually not much is there.

You can’t afford it, so don’t do it. There is no treatment. You can adopt any autism friendly strategies now, if he doesn’t end up with a diagnosis, no harm done.

If he has ASD then a diagnosis is useful for EHCP, and you can utilise his pre-school years to understand what he's needs for school will be. If ASD is the case then the diagnosis is by no means a silver bullet - you will still need to fight every step of the way to have his needs met in education (and ensure his EHCP is actually adhered to).
A private diagnosis can't be refused if it has been given within NICE guidelines - however some LA's may try it on, you'll learn to not take what they say as granted.
Some private psychiatrists will offer pre assessment screening to see if it's worthwhile going for full assessment, so could be worth considering that approach. Or if he's going to be going to pre-school soon, use the next year to observe with them - decent nurseries with well trained, switched on staff can be good barometers, and their input can be used in an assessment.

The wheels turn slowly in the education system, especially when it comes to obtaining funded assistance - you're better off being proactive sooner rather than later, that doesn't necessarily mean assessment now, but certainly preparing yourself with knowledge and evidence for the system. You may not need it but only time lost.

I'm in Ireland so different but I went private with my son, he got a diagnosis at 2yrs 8 months, cost €1500.
We spent a good few months debating whether we should go private or not, so I understand your current feelings.
On the HSE here my son would have been 4 by the time he was assessed.
I'm really happy we did it. I feel like people around him understand him better (e.g. family are more attune to why he might meltdown at a family bbq, make accommodations to help him where they may not have before, often blaming our parenting), his creche were able to secure extra supports, as were preschool, we got Domiciliary Care Allowance which helps with private therapies, it's helped my relationship with my husband weirdly as we are working as a team to help him, as we did before but in a more enhanced way.
I've also read a lot of writing from autistic adults who place value on the diagnosis which is interesting..

My son was diagnosed at three and a half, hes eleven now so things may have, changed, but why would it take years to be seen on the NHS?
Is it a backlog because of covid? Depending on how impacted the child is the diagnosis can take a long time, my son was diagnosed within seven months of being referred but it was blatantly obvious.

Ehcp and similar should be needs based not diagnosis based.

Locally the nhs have employed a private company to help clear some of the backlog. My sister was told it would be two or more years but she was offered this private company and within 6 months my nephew is now mid assessment so even on the nhs things can change quickly

And it isnt necessarily easier to diagnose a seven year old than a two year, its about how it affects the child.

@Sirzy EHCP should be needs based rather than diagnosis but the reality is they're hard enough to get with a diagnosis and a diagnosis is extremely useful evidence. The current system is just about broken.

There is no point paying £1000 for a private assessment for two year old, it really would be a waste of money.
It will be fine op, you will be on the pre-school assessment pathway and while the wait lists are long, they are much much shorter than any other pathway.

Your ds is lucky to have such an on the ball mum who's got his back so early on. You’ve got SALT involved and had his hearing tested already.

My ds was on the preschool pathway but actually assessed about one month into his reception year.

If you are thinking your child will need to go to a special school he should be seen faster as you will need a referral. Your HV and community paediatrician are the people to help with this.

Two year olds develop in such a random fashion, nothing for ages then a lot at once. My two year old was mute and as a six year old won’t shut up. X

The waiting lists here were 2+ years 15 years ago when one of mine were diagnosed, still running at the same as currently waiting for youngest. It is not covid related but due to the ratio of children to professionals

I'd go private if I had the funds

Where I am, the nhs wait list was 2 years from submitting a referral to diagnosis. We went private (during lockdown) and got assessments and an autism diagnosis within 4 months.

It made a big difference for my son who was 3 and now 4 because his school nursery year was spent putting everything in place, SALT, EHCP, support plans, targets etc, so when he starts reception next week he has everything ready and his teachers have access to all the support and funding. The ehcp itself took 8 months to be approved and needed a lot of evidence to back up the need for one.

Had we not sent him to school nursery and not got everything in place he would be starting reception next week with none of this in place and probably still massively struggling with delayed speech and social development. Then it would be another year and be year 1 before everything would be sorted.

Having said that, there's no reason to put yourself in debt or financial difficulties. You can still access support and adopt asd strategies in the mean time and push for referrals to be made ASAP.

The autism assessments join the CAMHS general waiting list where I live, which pre Covid was 12-18months but is now 6 months longer. It takes that long cause we live in Scotland where CAMHS seems to be even worse than in England.

I dont know how a time limit can be given for an autism diagnosis tbh if its very obvious they can do give give a diagnosis quickly
Im aware some people can wait years for a diagnosis but i assumed this was because the autism may present more subtly? So professional, s may want to adopt a more wait and see approach?

My son was diagnosed at a Biscip panel when he was three and a half but it was blatantly obvious, and hes still non verbal at 11.

Tbh I’ve read up on autism a lot over the past year. And in my head, whether wrongly or rightly I’ve kinda decided and accepted that my son is autistic. All of my close friends and family who know my son well agree that’s probably the case too. Of course I haven’t had a professional tell me that is 100% the case. & I’m not sure just knowing and having the diagnosis is going to make a huge difference in the way I approach parenting him or how family and friends treat him.

What I’m looking to get for him if I go down the route of being seen privately is more than just the diagnosis or more clarity. I want to be given the tools to be able to help him with his development and education. I want to be pointed in the right direction of people that can help him with his speech and communication etc. I want to be given useful advice on what I can be doing to aid his development and dealing with challenging behaviour. If I can access all of these things before being given a an official diagnosis then I think it would be pointless spending money I don’t have just to simply get an official diagnosis as I don’t think it will change the way I’m currently approaching parenting him. However if it’s going to be difficult for me to access certain services without a diagnosis then it’s worth going down the private route sooner rather than later. If all of that made any sense at all? 🙈

You can access everything without a diagnosis. My near 7 year old didn't talk till she was 3.5. She bit scratched and hit any other child and my god the fights with her sister. Anyways she isn't autistic and talks fine now. She struggles with reading and writing but she will get there. The only thing I can see a reason as to why you may want a diagnosis early is for claiming pip or dla for him. If this is the reason then maybe private would be helpful if you aren't then I can't see why you would.

We went private with our son who was diagnosed at age 8, after years of SLT and audiology involvement. The NHS refused to assess him, despite a referral from educational psychology. Said he didn't qualify as he coped with school work. Waiting list here is between 2/3 years (SE). The diagnosis helped us understand him, but there is no real support from school or anyone else really. It was taken away due to budget cuts. I would wait for the NHS in your situation tbh and maybe see if there is a support charity nearby to give you some advice.

There's no difference in our support post diagnosis. It's all the same for us except we hope to have a clearer plan in place for his support in school (special or mainstream we are unsure at this stage). In fact we are still waiting for speech and language. You don't get more support with the diagnosis at this age, just a pack with lots of phone numbers.

If there’s virtually no difference in support then I see it as a bit of a pointless exercise going down the private route tbh.

The mum guilt of feeling like I’m not being proactive would probably really get to me however. I’ve exhausted all avenues now and the only thing that’s left to do other than waiting for the NHS is to look into going private.

Don't dismiss the diagnosis, it doesn't change the 'standard' after care package (nigh on nothing in place) but it changes your ability to fight for the additional help needed when you need it. And if your child's needs are somewhat hidden or not obvious you will absolutely need a diagnostic label, because school will say 'they're fine' as much as possible, because there is little money available - you will have to fight for it. It might seem irrelevant in the early years, but as academic pressures increase its common for a child to go from coping, to not, very quickly.
As someone in this situation, but further down the line, if you can get a private assessment - do it, do not trust that the system will support your child, because it really is the bare minimum.

I don’t know if he’s too young to be diagnosed in the way my child was.

We went for a private Ed Psych assessment, happened within a week of getting the ball rolling, cost nearly £500, 2 and a half years ago. I think the EP cost could be hugely different across the country. From there everything else was through NHS usual channels. EP gave a good indication that an ASD diagnosis was likely. It took less than 11 months from first query to confirmed diagnosis, but I understand that that is probably very quick. Paying for EP definitely reduced the timings massively.

I would start with a conversation with your GP. Good luck.

We are in a similar situation. Our DD is 21 months old and has been showing signs since she was about 12 months I would say. She suddenly stopped smiling socially, doesn’t talk or babble or respond to her name (she used to say mum but stopped a few months ago). No pointing, waving or sharing of toys. Obsession with spinning wheels, letters, shapes and numbers and lots of repetitive play to name a few red flags.

Ultimately we are also going down the private route for a diagnosis. Mainly so we can access any help she may need as soon as we can and to get her on our ‘LEA’s radar’ sooner rather than later as I hear wait times to get anything done can be incredibly long!

We’ve self referred to the NHS SALT and have recently contacted a private SALT who specialises in Autism while we wait. We’ve also started looking at a private OT.

DD was born premature so her development is monitored until she’s 2. We see a paediatrician every few months to monitor her progress and she has a routine neurologist assessment at 2 years old. But even getting her paediatrician to listen to our concerns atm is a struggle! Let alone getting her referred for an autism assessment.

Echoing someone above if you can afford a private diagnosis go for it. Definitely get a head start if you can because even with the close developmental monitoring we have now we are still fighting to be heard.

Good luck x