How not to get fobbed off at paeds appointment (asd)

[elliejjtiny]

Ds is 5. His older brother and his dad both have aspergers syndrome. We had concerns about him having asd from a very early age (newborn) and at 4 months old his neonatal paediatrician was concerned about his lack of eye contact and not smiling. It took until he was 3 years 9 months for us to get a referral to the community paediatrician and we had to wait months for an appointment.

He has now had 2 appointments with 2 different paediatricians and he has a 3rd appointment with another different paediatrician in 2 weeks time. Both times they have agreed that he shows symptoms of war but it's too early, he's too young, not enough evidence etc.

He is really struggling at school and at home he needs to be watched all the time otherwise he climbs everything and turns on appliances in kitchen, taps in bathroom etc. Windows and doors have to be locked at all times so he doesn't climb out and he still tries to get out through the cat flap. He needs several hours of running around every day otherwise he won't sleep until 10pm. Which needs to be closely supervised as he will climb over the garden wall. He needs a lot of sensory input as well. He can talk but mostly makes repetitive noises or says random phrases over and over again. He is fully continent at school apart from the occasional accident but at home he soils himself 1-3 times a day.

School have tried to get him more help (he gets band 3 funding at the moment) but they said he needs more evidence like a proper diagnosis of something to get him an ehcp. I've applied for dla for him but I'm not hopeful tbh as I've got no evidence apart from a letter from the school senco.

I'm just feeling at the end of my tether with it all and I think if they say the same again I will just cry in the middle of the outpatient department. To add to the stress, dh has a lump which the gp is fairly sure isn't cancer but he is being referred for tests and i'm really scared about that too.

Firstly, EHCP are based on need, NOT dx.

"The only difference is that students without a diagnosis will be assessed by the criteria for those young people with Social Emotional And Behavioural Difficulties, rather than on the Autism framework.

It’s also highly unlikely that you would be able to get an autism-specific school named on the EHCP.

But for the vast majority of students the difference a diagnosis will make to the level of support they are entitled to via an EHCP will be negligible. There is, therefore, no reason to wait until a diagnosis is complete or even begun to begin the process."
starlightandstories.com/2018/02/28/child-need-diagnosis-apply-ehcp/

"The only criteria you have to meet for an EHCP assessment is (i) that you suspect the child has special needs, and (ii) that you suspect that the child needs extra support in school. " www.goodschoolsguide.co.uk/special-educational-needs/legal/getting-an-ehcp

So, get the ball rolling. Apply yourself as then you have right of appeal.

Second, sorry to hear you are struggling so much. I know how hard it is and how horrible it feels when you feel that the professionals don't understand.
Do you have third parties - school, any babysitters, relatives - that can help provide you with evidence? We took in a statement from a club leader (older child tho!) Can you submit a log book of a typical day ahead of the appointment time so they can read it beforehand?

@elliejjtiny would ds climb and show he has no danger awareness etc at the appointment? If he would, let him. I know that's hard to let your child loose and look like you have no control, but you need to do it. At 5 that behaviour is not typical, you know that. The paed needs to know that.

Ds at one appointment, climbed up opened the filing cabinet drawers and stood inside and jumped out! my mum dived from her chair and caught him. He flooded the floor and sink, spun the dr around on her swivel chair, tried to type a letter up on her computer. Climbed and sat on her knee etc, he was like the Tazmanian devil. 🙈

I didn't just sit and watch, this was with both me and my mum trying to stop him. I was mortified but at the same time I was pleased he showed her a brief snapshot of what we have 24/7. it's ok telling the dr they have no idea of danger etc etc but it's helpful if they can see it.

You have your proof of educational needs you just tell your paed to contact school if need be. (Sounds like school are supportive by the senco writing a statement for dla)

Do you not already get melatonin for him? If not I would be asking for this at your upcoming appointment.

You don't need a diagnosis for an ehcp, ds had one before he got his ehcp but the other SN child in his year definitely had no diagnosis and got one.

And too young for a diagnosis? That's such bollocks coming from the drs mouth. Ds was diagnosed at 3yrs old and that's in an area which don't dish out diagnosis's to often from what I can make out. You also have family history of Aspergers with his dad and brother.

I do hope you get dla for ds, if school have sent in a supporting letter that's as good as evidence gets! Fingers crossed.

I hope Dh news comes back ok I'm under investigations for something at the minute from a some dodgy blood tests and I've convinced myself google has that I have liver failure so now I'm worrying about that.

Never bloody ending. I feel for you

@23Squared thankyou. I didn't realise a diagnosis wouldn't make much of a difference so I'll get the ball rolling with an ehcp for him. We don't really have any third parties who could give evidence apart from school. Most babysitters etc wouldn't touch him with a barge pole as he is "difficult". Sometimes I think school only look after him as they have no choice .

When he is happy he is lovely and when he is on a swing or playing with water/bubbles he has a smile that lights up a room. It's hard though. Now that he is 5 it's getting harder to find sensory rooms/areas that will let him in. A lot of soft play places have bubble tubes etc in the toddler area but not many people want a 5 year old licking and hugging the bubble tube near their baby.

A log book of a typical day is a good idea and I will get copies of everything to bring to the appointment too.

@danni0509 thankyou. DS might climb at the appointment or he might just sit and ignore us and the dr while making a tuneless humming noise like a low flying aircraft. It depends on if the toys in the room look more interesting than the light switches, hand sanitizer etc.

We don't get melatonin but I will definitely be asking for that. Senco is good and has a child with a disability herself which helps I think. Her letter was really good and she said in it that he almost certainly had asd but he was just waiting for a diagnosis.

I hope you find out soon about your investigations. The waiting is the worst bit. DH's blood results came back borderline for diabetes so he has to have them redone. I'm hoping that means he hasn't got cancer but I don't know if that would show up in a blood test.

I am shocked that with your son's level of need that it has taken them so long to give you a diagnosis. DS was diagnosed at 4 after a year on the waiting list, this was at the second appointment six weeks after the first. I have been told that if you apply for an EHCP yourself in my area it gets processed faster than if the school, not sure if your area is the same but I would apply anyway as it sounds like he will qualify for extra support and school based evidence should be enough. Do you have a speech and language therapist at all? The school can refer if not. DS was very much like him speech wise, mostly echolacalia rather than constructed sentences (phrases from TV shows etc...), his SLT used PECS and now he is fully verbal )with slightly odd sentence construction and some issues with understanding complex requests). Hopefully the letter from the SENCO will help with the dla, they don't need a diagnosis, if you don't get it first time definitely appeal as I was told by the charity worker that helped us with our application that lot of cases get awarded on appeal. It is tough when you feel like no one is listening, we were raising concerns via HV for 2 years before school eventually referred ds soon after he started.

@123bananas thankyou. Ds was seen weekly by the speech therapist at preschool from aged 2 to 4 and then when he started school it was a lot less often, just twice in his reception year. We've now got an open appointment so we can call her or the school can but she isn't going to see ds routinely anymore.

The appointment today was kind of weird tbh. The Dr went over ds's birth again. He couldn't find the report from school but after I said it had definitely been sent so he had another look and found it. He then said that the school don't think he has any problems which is the total opposite of anything they have said before. He then said from our questionnaire that we filled in it looks like he has autism but from his behaviour at clinic and in the report from school it looks like he has learning difficulties but not autism. He is referring him for an autism assessment which will take about a year. We asked him about melatonin but he said that as he currently sleeps from 10pm to 6am at the moment with the odd wake up at 2am then melatonin would probably cause him to sleep 7pm to 3am which would be worse.

Ds was happy at the appointment, probably because he knew he was getting time off school. He wasn't throwing things, shrieking and smiling himself like he does when he is upset. He was ignoring us and the dr, taking toys out of the box and putting them back again and quietly humming to himself.

I really need to get hold of a copy of the letter that the school sent because that doesn't sound right at all. Either it's a very old letter written when he had only been at school a few days or the dr has misinterpreted it completely.

Oh and dh had the all clear this week. His lump is a harmless cyst thank goodness so that's one weight off my mind.

One thing you could do for next time is to video your son and show dr what he is like during a manic day/time.

Hope you get some support for all of you x