Diagnosis waiting times

[cuju2407]

My son is 2 1/2 years old and we were referred for an autism assessment last November. I was told in January during a meeting with the child development centre that an appointment with a paediatrician would take 12 months. We had a catch up appointment today to chat about any progress and I asked if there was any clearer time scale and was told the wait list is around 2 1/2 years at the moment. I cannot believe this is the timescale to see a paediatrician. We are receiving no help or support whatsoever and I can't believe we still have another 2 years to wait. Just looking to see if people are experiencing same wait times and if anyone thinks it's beneficial to go for a private diagnosis

Yes it's not great we've been on waiting list since July 2019 and have been told another year recently - dc will be nearly 18 when assessed and I've been saying there were traits since the two year health visitor check. So I can totally relate, just had dc2 referred and I can't imagine the wait since covid. There must be lots of families in a similar situation and struggling every day. I've no idea how you speed up your referral or get much support in the mean time (although Dc1 current school do make small consessions (pre booked meals, changing the way they talk with dc, pre warning of changes in school day) however this is a really small concession in what dc really needs support with. I feel I've spent the last 15 years fighting to get dc the support they need.
Keep going and do your best, tears at the doctors has helped push things along occasionally but it shouldn't have to come to that.

@Clockingon

Yes it's not great we've been on waiting list since July 2019 and have been told another year recently - dc will be nearly 18 when assessed and I've been saying there were traits since the two year health visitor check. So I can totally relate, just had dc2 referred and I can't imagine the wait since covid. There must be lots of families in a similar situation and struggling every day. I've no idea how you speed up your referral or get much support in the mean time (although Dc1 current school do make small consessions (pre booked meals, changing the way they talk with dc, pre warning of changes in school day) however this is a really small concession in what dc really needs support with. I feel I've spent the last 15 years fighting to get dc the support they need. Keep going and do your best, tears at the doctors has helped push things along occasionally but it shouldn't have to come to that.

Thank you for your response. I really feel so upset today as I had expected to get his appointment in the new year so to go from this to finding out it's a least 2 years still to go has floored me. I am at a complete loss of what to do next and feel like a complete failure. Every avenue I have tried has been met with a brick wall. We've been offered a place at a local authority nursery but we are struggling to afford it. His funding won't kick in until he is 3 and I am just at a loss of where I can turn to for help x

We had this problem three years ago and I can relate. Are you seeing a developmental pediatrician? What eventually worked was getting the developmental pediatrician to look at a list of private doctors doing ADOS assessments. She found one that was also being used in our area by the nhs. She agreed to endorse the private assessment that was done by this doctor (who we would I have had to wait forever to see) and this helped the Local Authority to accept the private diagnosis. It’s sad that the system works this way and that it takes this long and or costs so much money. I completely sympathize.

@Pacifica44

We had this problem three years ago and I can relate. Are you seeing a developmental pediatrician? What eventually worked was getting the developmental pediatrician to look at a list of private doctors doing ADOS assessments. She found one that was also being used in our area by the nhs. She agreed to endorse the private assessment that was done by this doctor (who we would I have had to wait forever to see) and this helped the Local Authority to accept the private diagnosis. It’s sad that the system works this way and that it takes this long and or costs so much money. I completely sympathize.

The only person we have spoken to about him is the child development nurse. She called yesterday for to see how he is getting on. All we have had since my health visitor put in the referral is two calls. No single appointment in person and the impression I get this is how it will be for the next couple of years. The only thing we have been offered is some leaflets. She is planning on calling back next month for a follow up appointment, probably because I burst into tears and she couldn't get much out of me after that. I think I will ask her about a private assessment at that appointment and see if it's possible. I don't know if I am just expecting too much but I honestly don't understand how people can be left this long with no help or support. I also don't know how much in the way of support come once the diagnosis is made. It all just feels like it's going to be a constant battle 😢

Hey. I was in a similar position several years ago. My DS was flagged with ASD traits at 18 months. We got a formal diagnosis at 9. Where we are, I've heard the wait time now is around three years.
Although it took so many years to get a formal diagnosis, his nursery and primary school were pretty good at providing him with support.
These are the things I did. This was some time ago though and I know there have been very serious funding cuts so apologies if some of this is out of date -

I made sure DS was on the radar of as many professionals as possible. Does your DS have speech/language/communication concerns?
My local authority nursery ran free SALT drop ins. I took him along and got a referral. Sometimes a speech and language therapist can help with an ASD referral. They can also write reports which can help with nursery/school applications and DLA.

My DS's nursery took him from two years old - for free - because of his developmental concerns. Have you spoken to the nursery? My DS's nursery had a Senco and she was really helpful - again in supporting our DLA application and also ensuring that DS got support when he moved to primary school.

I applied for DLA. My DS was awarded it from 2 years old - despite having no diagnosis. DLA can be hugely beneficial. You can use it to pay for various therapies for your DS.

Google your council's 'local offer' - this is information about all the services available to families with children with additional needs (some councils are better than others).

Is your GP in the loop? Again, some GPs are better than others. He/she may be prepared to refer your DS to speech and language/OT/physio. The more reports and professionals your DS is know to, the better.

I have two box files of reports for my DS now. All this was hugely helpful for when we applied for his EHCP - which is now in place for secondary.

We did look at going for a private diagnosis at the Lorna Wing center. I think it was going to be a few thousand - they spend the whole day with you and your DC. We decided to wait it out though as he was getting fairly decent support.

Sometimes a NHS appointment crops up from a cancelled appointment so you never know.

Fingers crossed for you and good luck.

@Toomanyminifigs

Hey. I was in a similar position several years ago. My DS was flagged with ASD traits at 18 months. We got a formal diagnosis at 9. Where we are, I've heard the wait time now is around three years. Although it took so many years to get a formal diagnosis, his nursery and primary school were pretty good at providing him with support. These are the things I did. This was some time ago though and I know there have been very serious funding cuts so apologies if some of this is out of date -

I made sure DS was on the radar of as many professionals as possible. Does your DS have speech/language/communication concerns?
My local authority nursery ran free SALT drop ins. I took him along and got a referral. Sometimes a speech and language therapist can help with an ASD referral. They can also write reports which can help with nursery/school applications and DLA.

My DS's nursery took him from two years old - for free - because of his developmental concerns. Have you spoken to the nursery? My DS's nursery had a Senco and she was really helpful - again in supporting our DLA application and also ensuring that DS got support when he moved to primary school.

I applied for DLA. My DS was awarded it from 2 years old - despite having no diagnosis. DLA can be hugely beneficial. You can use it to pay for various therapies for your DS.

Google your council's 'local offer' - this is information about all the services available to families with children with additional needs (some councils are better than others).

Is your GP in the loop? Again, some GPs are better than others. He/she may be prepared to refer your DS to speech and language/OT/physio. The more reports and professionals your DS is know to, the better.

I have two box files of reports for my DS now. All this was hugely helpful for when we applied for his EHCP - which is now in place for secondary.

We did look at going for a private diagnosis at the Lorna Wing center. I think it was going to be a few thousand - they spend the whole day with you and your DC. We decided to wait it out though as he was getting fairly decent support.

Sometimes a NHS appointment crops up from a cancelled appointment so you never know.

Fingers crossed for you and good luck.

Thank you so much for your advice.

I have tried every avenue I could to get nursery funding but because we are in Scotland funding for nursery hours does not come automatically with DLA. Both my husband and I work so we are not claiming universal credit so we do not meet the criteria for funding. We do meet the criteria for a nursery place but we have to pay for it. We will definitely send him and we luckily have been allocated a place at a really good nursery.

We are in receipt of dla and I've cut my hours to claim carers allowance. So for the moment the dla award is mainly to help us financially but we decided that me being home with him more often and giving him one on one is worth the financial hit. Even if I do find it unfair that early years support for him is basically means tested 😡.

We had one telephone appointment with a speech and language therapist. He is non verbal and has very little skills in communicating his needs. She felt he was to young for intervention at the moment and discharged him until a later date. She sent me some leaflets but it's basically information on what we are already doing.

I will definitely make an appointment with my gp as I've actually never discussed it with her yet as it's all been done through my health visitor. My health visitor hasn't been very helpful at all to be honest so I think paying a visit to my gp should be the next step.

Covid has probably not helped in terms of what is available. I feel he is so far behind in his development with his peers that I worry how this will play out in the next couple of years before school. I really hope and have faith that starting this new nursery will given us more support. I just still though can't get my head around families being made to wait this long to see a paediatrician x

Hi

I know things work differently in different areas (and perhaps England to Scotland even,) but 2 1/2 years to see a paed seems crazy!
Did the person who you had the catch up appointment with, specifically mean an individual paed appointment will take 2 1/2 years, or the actual autism assessment (which yes, a paed would likely be involved in (as well as other professionals)) will take 2 1/2years?

I ask because the diagnostic process for us (England) took the same route for both of my children...
-GP.
-Then GP referred to community paed.
-Roughly 4 months wait.
-Then community paed referred to autism assessment pathway.
-Roughly a years wait.
-Then autism assessment was multidisciplinary, involving said (or another paed.)

What I'm trying to say is your GP may (whilst you wait for the ASD assessment) refer you for an individual paed appointment (which should take only months) and that paed may be able to give you some verbal/written support, that may give you access to some more practical/restbite type support.

Failing that are there any local SEND support groups you can join? Local parents and carers are usually a great source of experience and advice.

Also, talk to the nursery when he starts and discuss whether your DS needs an EHCP. This is not diagnosis based and the needs assessment involved should identify each need and provision that has to be put in place to support.

Hope this helps.💐

(* My silly stars were to remember to express that before seeking help from the GP, we did of course seek help from entry level type supporting services, but all of their common sense parenting strategies (though well meaning) did nothing but cost us time, sanity and make wish I'd just gone straight to the GP in the 1st place.)

@pandyandy1

Hi

I know things work differently in different areas (and perhaps England to Scotland even,) but 2 1/2 years to see a paed seems crazy!
Did the person who you had the catch up appointment with, specifically mean an individual paed appointment will take 2 1/2 years, or the actual autism assessment (which yes, a paed would likely be involved in (as well as other professionals)) will take 2 1/2years?

I ask because the diagnostic process for us (England) took the same route for both of my children...
-GP.
-Then GP referred to community paed.
-Roughly 4 months wait.
-Then community paed referred to autism assessment pathway.
-Roughly a years wait.
-Then autism assessment was multidisciplinary, involving said (or another paed.)

What I'm trying to say is your GP may (whilst you wait for the ASD assessment) refer you for an individual paed appointment (which should take only months) and that paed may be able to give you some verbal/written support, that may give you access to some more practical/restbite type support.

Failing that are there any local SEND support groups you can join? Local parents and carers are usually a great source of experience and advice.

Also, talk to the nursery when he starts and discuss whether your DS needs an EHCP. This is not diagnosis based and the needs assessment involved should identify each need and provision that has to be put in place to support.

Hope this helps.💐

(* My silly stars were to remember to express that before seeking help from the GP, we did of course seek help from entry level type supporting services, but all of their common sense parenting strategies (though well meaning) did nothing but cost us time, sanity and make wish I'd just gone straight to the GP in the 1st place.)

We were told it would be 2 1/2 years to see a paediatrician to begin the assessment. Nothing has been explained in terms of what actually happens next just that we are on the waiting list. In the meantime while we wait the child development nurse will call and ask for updates. I suppose these are the questions I need to start asking at the next appointment. I agree that it's absolutely crazy to be expected to wait that long.

I think a lot of local support has been put on hold because of covid but thankfully as restrictions are starting to ease we should hopefully get more support.

Hopefully when he starts nursery this will also help put care plans in place.

I just can't believe what a drawn out process it is. It's been a year since I first approached my HV about my concerns and I just feel like we are no further forward.

Thank you for your advice. I am definitely going to go to my gp and see what help they can offer x

I am shocked at the advice you were given by speech and language. This is precisely the age where intervention can really make a huge difference. My DS was non-verbal until almost 4. He had speech and language intervention from around 2 as he was making no attempts to communicate at all (no gestures/pointing etc).
I would suggest to raise this when you speak to the GP. I appreciate that COVID is causing all sorts of backlogs but even so.

Hopefully the nursery will also be able to flag his communication issues up. It's great that they sound supportive. To be honest, for me it was a relief when my DS started nursery so selfishly I could get a few jobs done around the house/admin - and just have a chance to sit down with a cup of tea.
Looking after our own mental health is especially important when you're a carer.

It sounds like you're really on the ball and doing a great job with supporting your DS. Unfortunately life can feel like a constant fight when you have a child with additional needs. My DS is 11 and I've been fighting for the support he needs - and he's entitled to - for many years now.

There are some really helpful, knowledgeable people on these boards though.
I would also recommend the charities Ipsea and SOS!Sen.

@Toomanyminifigs

I am shocked at the advice you were given by speech and language. This is precisely the age where intervention can really make a huge difference. My DS was non-verbal until almost 4. He had speech and language intervention from around 2 as he was making no attempts to communicate at all (no gestures/pointing etc). I would suggest to raise this when you speak to the GP. I appreciate that COVID is causing all sorts of backlogs but even so.

Hopefully the nursery will also be able to flag his communication issues up. It's great that they sound supportive. To be honest, for me it was a relief when my DS started nursery so selfishly I could get a few jobs done around the house/admin - and just have a chance to sit down with a cup of tea.
Looking after our own mental health is especially important when you're a carer.

It sounds like you're really on the ball and doing a great job with supporting your DS. Unfortunately life can feel like a constant fight when you have a child with additional needs. My DS is 11 and I've been fighting for the support he needs - and he's entitled to - for many years now.

There are some really helpful, knowledgeable people on these boards though.
I would also recommend the charities Ipsea and SOS!Sen.

Thank you so much for your response. You have summed it up... it all just feels like a constant battle. I just can't believe that that in this day and age parents of additional support needs still have to fight for the best for their child. My eyes have been completely opened to it.

That's really interesting what you have said about speech therapy. I must agree I was shocked when they discharged him to considering he's non verbal. I will definitely be challenging this x