I don’t want ds autism test redone ? Can I refuse

[Seventhirtyanditsearly]

Ds has a diagnosis of ASD (private) as the waiting lists are so years and we were told his referral would be rejected anyway as he wasnt at any kind of nursery or school setting (?)
Since starting every time we discuss something and mention asd we are told ‘no he’s doing that because he’s little ‘ or ‘this is typical 2 year old behaviour it’s nothing else’

We knew there was something so we pushed ahead privately so we had the diagnosis as could then access more help while he’s still really young (2).

Now the nursery and HV have told us that they are referring to get a nhs neurodevelopment assessment (isn’t this an ASD assessment ?) we have declined saying he only just had one !!! They want it done I feel like they are querying his private diagnosis? (It was done in accordance with NICE guidelines so it’s valid)

What can I do ?

I hear you @PocketSand about being seen as the problem. I have experienced that over the years as my Ds has been diagnosed with more and more issues. All issues that often are concurrent with ASD such as Tourettes, ADHD, SPD etc. You get the raised eyebrow from the HCP. His most recent diagnosis was something very physical (scoliosis) and I confess that it felt a relief that it was something totally 'obvious' for a change and not something that could be dismissed as 'mother imagining things'.

Thing is though it may be that issues with your child are for life.

Not everything can be fixed or will pass.

Nursery are thinking in the short term. School are thinking in the short term. But what they do or don't do impacts on the long term.

DS1 might have been a recluse anyway but his experiences made sure of that.

And I still feel guilty that trying to advocate for him made things worse.

Because the narrative is that the truly deserving don't need advocates.

It is tough and tough and tough. And we mothers and parents are so often misunderstood and even maligned. I spend alot of time on MN talking about it because too often MN and the people on it were the only ones who really understood what it is like.

My DS was self harming and suicidal at 9 years old FGS. I get so angry with the HCPs who give me the side eye when I present with another issue (tics or fits). The one who suggested (after witnessing a full on autistic meltdown where he tried to strangle me) that he might be a 'psychopath' - fucking CAMHS 'specialist' ffs.

OP... change nurseries. But do take a referral if offered. Ds has had a number of neuro developmental assessments and it is not only about autism. Each one has sort of built on our knowledge and has developed with him as well as he has gotten older. I was reading one of his assessments the other day from when he was 9. What his needs were then are so different from what his needs are now. The 9 year old assessment informed us and helped us and we and the school put measures in place and now he is on the cusp of perhaps even functioning. I do not doubt we will have another again in the next 2-3 years or so.

And to everyone.

My d got her dx at just two through NHS. Not sure whether the process remains the same but it didn't happen in one day. D was referred at 13 months for chromosome and metabolic disorders tests when these came back clear she was referred for assessment for autism so would have been 17 months then. So appointments for hearing and sight, then multiple appointments with SALT, OT and Psychologist. Six weeks at the nursery at CDC where she was observed by the whole team as well SSSEN early years education. Then there was a team meeting and given diagnosis just days after second birthday.
I can see why you wouldn't want a reassessment but from what you write dd's was a more thorough assessment and they brought in education as a matter of course which is what you are wanting.

Hi to all on the thread with experience,
Can I ask for those who have secondary school aged DC with a diagnosis of ASC - aside from the child themselves feeling better about their identity - in practical terms what did a diagnosis bring?

Practically- access to the SENCO who could help his teachers understand how he might learn or the difficulties he might have.

• exam access arrangements- so he gets some extra time and a smaller room for exams along with others who need this
• understanding when he finds things difficult (he has a habit of being overwhelemd and running out of class and going to hide up trees) and this is okay and the teachers just carry on and he is never castigated for this
• understanding that noise triggers him so he does not have to attend whole school assemblies / open days / lockdown drills / fire drills / sports days etc
• he has permission to leave class when he needs to - he tends to go to the Head of Year office and is given a cup of sugary milky tea and is left to chill and sent back to school when he is ready

All of the above has been amazing. He has gone from barely being able to function at school to being at the higher end of grades etc. Mostly A grades last report card [proud alert)

Also, DS is now very open about his autism. He says wuite openly; 'i am having problems with this). His peer group are incredible. He ran out of class when there was a substitute etacher a week or so ago and his class just said to the teacher; 'Oh he has autism and it gets too much. He'll be back soon' and then everyone just carried on.

I do these assessments for a living. Do get your DS seen by the NHS. From what you describe there may be more going on than ASC and he may need other testing. Your health visitor may be not be explaining it well, but if he has been accepted as an urgent referral it is likely because they feel he really needs to be seen. This is much more likely than trying to overturn your private diagnosis. Anyway good luck with your LO sounds tough.

We are not quite there but secondary in September. My child's ASD diagnosis, along with other professional assessments and reports, have informed her EHCP. This has allowed her to gain a space in a communication and interaction specialist unit attached to a mainstream secondary. She will be given more support with her learning, but also with life skills and other non academic skills which she has not learned naturally, while still respecting who she is as an autistic person. And if she'd needed a full specialist school, most of those in our area for autistic children require a diagnosis or working diagnosis.

We got a private diagnosis for our son just after he turned 3 a year ago. He was already on the (long) NHS waiting list after GP referral and had some sessions with NHS SALT and hearing tests etc. The assessment centre we went to met NICE guidelines, they sent a copy of the report to our GP, and a few weeks later we got a letter from NHS recognising the diagnosis and officially removing him from the waiting list. The blanket statement that a private diagnosis won't be recognised is outdated / innacurate since Covid stretched waiting lists and resources.

But if thats the case then wouldnt it be beneficial to start early intervention now rather than having to wait till after the nhs diagnosis as well, in my experience it is whatever excuse is available thst is used to kick support being given down the road and in this case the excuse for not giving support is thst its not an nhs diagnosis.

Incidently my son was diagnosed through the nhs back in 2017 and the excuse after diagnosis against giving any support was thst they wanted to see if things magically improved now he had a diagnosis

It was obvious at two (and before) that my DD had ASD so I am not disputing the diagnosis. However, you will find it is normal that it’s only an NHS diagnosis that is taken seriously in childcare and school settings. You also won’t necessarily be entitled to any medical treatment or prescriptions as they will be administered privately in line with the initial diagnosis being private.

It concerns me that the original test was so awful you don’t want it to be repeated. I’m surprised that at two your child even realised what was happening and the NHS assessment is not traumatic. It’s a referral form, questionnaire, observation, discussion. It’s not anything to worry about and it’s necessary really for your child to fully benefit from all the support available. What’s more, it won’t even cost you anything other than a small amount of time. What wouldn’t you do it got your child?

It was the ADOS. He just can’t cope with people. He’s withdrawn at nursery they said they can barely even approach him so they leave him to it.
Any contact with people he doesn’t know is horrendous it’s like he goes into shock

I begged the HV previously for a referral I kept getting told no and to get him into nursery as it would help. That the wait was years anyway . So I did but we also went private now suddenly they are saying they will refer

The ados should be, at most, an hour. I think you will end up regretting it if you don’t. You are armed with the knowledge of how it impacted last time to be able to explain to the psychiatrist and support your child through it.

Most people who go privately do so because the NHS won’t assess or else they do both out of necessity and stay on the NHS waiting list throughout the private assessment.

The NHS will also look at far more than just ASD and the additional support they have provided my child since diagnosing her is incredible - she has a gastroenterologist, a dietician, speech and language therapist, sensory OH, a paediatric play psychologist for anxiety etc. These wouldn’t be supported and provided by the NHS without their diagnosis.

Yes it was about they before but we had 8 weeks after it where each night he was up screaming (night terrors) and the only thing we could make out as he’s non verbal was a few things all relating to the ados (the toys they had and one of the activities) it traumatised him. To me it didn’t look too bad it wasn’t scary obviously but he was petrified I just feel so awful if he had to be assessed again . I begged for an nhs assessment previously and got told no !

In reality they r right, not every thing is down to ASD, and once diagnosed parents put everything down to it and instead of addressing behaviour they dismiss it.

It was the ADOS. He just can’t cope with people. He’s withdrawn at nursery they said they can barely even approach him so they leave him to it.
Any contact with people he doesn’t know is horrendous it’s like he goes into shock

What is your plan for the future if a one hour session with a friendly speech therapist and paediatrician (and you in the room) sends him into shock for 8 weeks? You mention that you pursued diagnosis in order to get SLT help etc, but this will not be possible if your DS can't tolerate such interactions. School, dentist visits, healthcare when he is sick...all these things will be impossible by your argument. There is nothing about ADOS that a 2 year old would distinguish from any other therapeutic interaction.

I honestly think you will need help outside a straight ASD diagnosis, and further assessment is a good idea.

He’s the same with other things , family , gp appts, if he encounters people he isn’t familiar with or places he isn’t familiar with or knows but isn’t happy about.

I’ll be honest I don’t know what the plan is I really don’t know , he’s very severely affected and I really truly don’t know going forward

My son had a private asd and adhd assessment and was diagnosed with both.

His school accepted the diagnosis and his NHS paediatrician also accepted the diagnosis.

Your DS may be referred to an NHS paed who will read the private assessment and agree hopefully meaning your DS won’t need to be reassessed.

My dd was like this. But it has improved as she’s got older. No one picked it up at school though.

What county do you live In as ive never heard of anyone getting anywhere near that level of support after diagnosis from the nhs? My son was discharged on diagnosis and we got a few photocopied leaflets and sent on our way, this is same experience as most people I know. Our local area nhs ot’s dont even cover sensory, only option for sensory ot is pay private or get it privately funded through an ehcp

OP, nursery staff 'leave him to it'. Leave him to what exactly? It doesn't sound like the right place for him at all.

He likes to seek out somewhere as quiet as possible , away from toys (I feel like he knows toys=other children) he spent a lot of time by the fabric based display I mentioned earlier just playing with that till it was changed or he will trace round the pictures on the carpet or outside will stay in a corner and tap the floor or fencing etc and they say they allow him to do that as if anyone approached him he has ‘tantrums’ they asked once did I actually start taking him out to see people after covid (I did !) as if I’ve stopped him socialising .

I just feel like for every ASD related issue they’ve come up with an alternative so autistic meltdowns -toddler tantrums , autistic shutdown-he’s just tired , hand flapping - he’s just little it’s normal , hating contact with others - not socialised when things went back to normal after covid , not eating (won’t eat there)- me not offering a variety of foods in a fun way at home

I just feel like I begged for a nhs referral and was told no, so went private and told ‘get him in to a nursery’ so I did hoping that will help as was told that’s the best thing for development but they aren’t working with me . Suddenly now I can have an nhs referral after being told no and it’s just honestly so stressful as they’ve not offered it in any kind of supportive way it’s being presented like it’s double checking (that’s my interpretation after things they’ve said )

Im not sending him back tomorrow, I’m going to take him out. I will make a gp appt as they’ve been so helpful and see what they think as I need a lot of fresh eyes on the situation from a professional perspective and someone I trust who I get on with and if they think yes go for some nhs check too then I will