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If your ASD child got a diagnosis....

(23 Posts)
RageAgainstTheVendingMachine Mon 08-Apr-19 21:15:51

...what did this mean for you in practical terms?

Did you have to go private?
Did your school organize an ed psych evaluation or did the LEA pay for an assessment centre?
Were there any adjustments made pre-diagnosis?
Was your child already on an IEP/ILP pre-diagnosis?

Post-diagnosis, did anything change for your child's provision or for your family and, if so, how/what?

Many many thanks for any anecdotes/tips/advice you can give me?
I will be very grateful for any responses. flowers cake

BackforGood Tue 09-Apr-19 00:08:40

Not my child, but an area I work in, if any help ?

Do you have to go private - no. NHS have waiting lists, but it is free at the point of need, to everyone.

Did your school organize an ed psych evaluation or did the LEA pay for an assessment centre? - do you mean for the diagnosis ? EPs can't diagnose, it needs to be a Paediatrician / medical Dr to give any diagnosis. Or do you mean for an EHCP? In which case, in our LA, the school will involve the EPs. Not sure what you mean by an assessment centre ~ maybe different language used in different parts of the country (?). The Autism assessment here wold be done at the Child Development Centre, which is funded by Health (as is a medical diagnosis). I've read on here that in many parts of the country it may be a clinical psychologist, at CAMHS, but, again this is health funded, not LA. If you mean assessment for the EHCP, then the EPs would come into school.

Were there any adjustments made pre-diagnosis? - Virtually always.Whether that is at school, or pre-school

Was your child already on an IEP/ILP pre-diagnosis? - as above. If the autism is affecting the child to a degree where a diagnosis can be safely made, then I'd like to hope ALL educational establishments were differentiating for the child, and have them on some kind of individualised plan, whatever they may be called in that particular school.

Post-diagnosis, did anything change for your child's provision or for your family and, if so, how/what? - In our Authority, parents can access some training / inofrmation workshops after diagnosis. The schools can also then get support from the Autism Outreach Team from the LA.

RageAgainstTheVendingMachine Tue 09-Apr-19 01:33:19

Thank you good
So I read here that parents can drive/push for an EHCP.
Total honesty - I did know what EHCP stood for blush I had only heard of IEP/ILPs - I assume the latter are school-based only?
So, anyway, further questions if you don't mind, I am grateful for any input, insights or experience:

What would be the order of things usually, in your experience?
Do parents ask the school Senco to do initial observations/assessments first and they get an individual learning plan off the back of that? Then school and/or parents push for an EHCP? Or are they the same thing?
(I have been out of the country for 12 years. When I used to teach secondary, an ILP usually had pupil's areas of difficulty, their SMART targets and what adjustments needed to be made/what support was in place to meet said targets. In the olden days, this was based on their Statement but iirc the latter doesn't exist anymore).

RageAgainstTheVendingMachine Tue 09-Apr-19 02:07:29

Ah, googling has informed me that EHCPs replaced Statementing.
Okay, so, if I have understood you correctly then:

Schools are in charge of Individual Education Plans/initial adjustments but can access Educational Psychologists with regard to getting an EHCP. An EHCP is enshrined in law as opposed to an IEP which is based on school systems.
But to actually get a diagnosis, that has to be done by a paediatrician or clinical psychologist in a Child Development Centre.

(When I said assessment centre I meant somewhere like the Elizabeth Newson Centre in Nottingham or the Lorna Wing Centres for Autism). They do play-based assessments afaik but even though you can pay for private assessments 3.5k? iirc all referrals including self-referrals need to be supported by a paediatrician in any case.

Have I understood it correctly?
Final piece of the jigsaw then...
Does it go IEP then EHCP then Diagnosis
Or does it go IEP then Diagnosis then EHCP?

Am I to assume that the LEA will only refer for an EHCP and that the NHS will only fund an assessment if the school supports both referrals and that there needs to be several months of observation/experience first?
Or can a local GP and/or parent set the ball rolling?
I don't know what job you do good but our circumstances are laid out in my parallel thread below. I basically need to know whether I need to let school lead, drive assessments myself, contact social services or find a paediatrician willing to refer and find the money to fund a play-based assessment.
I don't want to tread on any toes or do things in the wrong order but I am going to need as much help as I can get so want to hit the ground running.

Many many thanks in advance flowers

RageAgainstTheVendingMachine Tue 09-Apr-19 02:14:35

Sorry, lastly how is CAHMs accessed and do they provide any support at key stage 1 (son is only six). I thought I had read on here that if a child is deemed to be high functioning autistic then CAHMS cannot help them (But I know ASD is a spectrum and I know that HFA/Aspergers is no longer a diagnosis so not sure how that would fit anymore)
Again, thanks in advance cake

FangsTasticBeast Tue 09-Apr-19 02:33:19

In my area parents can apply for an echp, the forms are on our local council website

Ds2 was diagnosed at 2. He’s been in mainstream school since 2.5

He has an iep (assessed by Senco) but we haven’t applied for an ehcp, I’m pretty sure he wouldn’t get one without a huge fight as the school are very good at meeting his needs atm

He has a portage worker, we were referred by the health visitor who also referred him for his asd assessment and specialist salt. We have no dealings with camhs due to his age (6 now)

He’s had the portage worker since he was 2, she came to the house once a week and then started seeing him at school once he was 2.5 , they help with transition to nursery/school but I can always ring her for advice if I need to

Salt saw him at home for the first 4 sessions then saw him periodically for the 6 months he was in the nursery room to help with social communication and play.

FangsTasticBeast Tue 09-Apr-19 02:35:25

A school can do an iep without a diagnosis. My older son has one because he struggled with maths and learning to read but he doesn’t have a diagnosis

RageAgainstTheVendingMachine Tue 09-Apr-19 17:32:13

Thanks. [ flowers]
Bumping x

lorisparkle Tue 09-Apr-19 19:32:01

In my experience..,

I pushed for an IEP at preschool to get the ball rolling in education. At that point he was only being seen by SALT who initially thought speech delay but eventually acknowledged a speech disorder.

I took him to GP when he was about 7yrs as I was still concerned there was more to it.

GP referred to paediatrician at local hospital.

She referred to OT, back to SALT and tgen to another Dr who did 3di assessment.

School got input from advisory teacher from communication and interaction team. School also referred to Ed Psych, Ed psych gave lots of useful advice but can not diagnose. Advisory teacher said 'he looks fine in class'!

We paid for private dyslexia assessment, which confirmed dyslexia diagnosis.

Eventually we had diagnosis from paediatrician that ds had atypical autism and dyspraxia.

His needs are not severe enough for EHCP but diagnosis opens up a level of acceptance and understanding.

ExpletiveDelighted Tue 09-Apr-19 19:44:01

Mine had an IEP and SALT support at nursery and was given one after a term at school. By year 2 a teacher nudged us to get started on NHS diagnosis, she got the ball rolling for us via school nurse. Diagnosis (ASD plus dyspraxia) led to additional support from OT however this was ceased late in year 4. School were supporting well throughout, however I initiated EHCP process in order to get the OT reinstated. School did not actively obstruct the process but did the minimum they could get away with, while still supporting in the classroom. EHCP application succeeded by year 6 but with private assessments and two appeals to tribunal was costly.

BackforGood Tue 09-Apr-19 22:17:58

Okay, easier to answer now with a bit more information smile

Under the 2001 Code of Practice, (When there were Statements and IEPs), all the 'paperwork' had been prescribed, so there was School Action / School Action Plus / then an assessment for a Statement.

Under the 2014 Code of Practice, it now goes 'Increased Differentiation' / SEN Support / assessment for an EHCP (Education Health Care Plan). The paperwork is no longer prescribed and every school can have it's own individualised system of paperwork - some LAs decided this was completely bonkers and devised their own for the authority / others just kept using an IEP (Individual Education Plan), but many have a whole raft of 'personal plans' which are different in every school.

However every school (or Nursery, or College - that act covers children and young people from 0 - 25 yrs old) has to keep a record of what differentiation they are doing.

The IEP (or whatever the school / nursery / college calls the equivalent document) runs - as it always did under the old CoP - both before and after the EHCP (formerly Statement) has been issued. It should be on a 'Plan / Do / Review' cycle about every 3 months. So, when a difference or need is first identified, you should have Plan one. Then, 3 months later, you should review that and see if the additional support or focus has made any difference.
Lots and lots of children will have IEPs (or equivalent) / be on SEN Support (formerly SA / SA+) without ever having an EHCP (formerly Statement. I don't know current figures, but it used to be said around 20% of the school population had SEN/D, but only around 2% had needs significant to need a Statement / EHCP.

However, to answer your question, the 'IEP's start long before the EHCP. They will form part of the evidence that is considered during the assessment that the Local Authority do to see if the child needs an EHCP. The then continue afterwards, to set shorter term, SMART targets for the child to work towards.

Now - all that is to do with them accessing education.
Separate from that, is a medical diagnosis, if a child has a syndrome or condition that is medically diagnosable. that can't be done by an EP, it has to be done by a medical doctor.
You don't need a diagnosis to get an EHCP
You don't necessarily need an EHCP when you have a diagnosis, but there is clearly a strong crossover.

What would be the order of things usually, in your experience?
Do parents ask the school Senco to do initial observations/assessments first and they get an individual learning plan off the back of that? Then school and/or parents push for an EHCP? Or are they the same thing?

Normally, the school will notice that the child isn't coping. There will be meetings with parents, then will write a plan, put interventions in, then review, write plan 2, etc..

Yes, you've 'got it' in paragraph 32 of your 3rd post grin

Am I to assume that the LEA will only refer for an EHCP and that the NHS will only fund an assessment if the school supports both referrals and that there needs to be several months of observation/experience first?
Or can a local GP and/or parent set the ball rolling?

It is the LA that does the assessment for an EHCP, (though a panel that should include representatives from Health, and Care, as well). Overwhelmingly the school refers to the EP, who assesses (and sort of moderates across the authority) and supports the school to apply for the assessment. Yes, there has to be evidence to back up the assessment request.
Parents can put in a Parental Request too - but they need to provide enough evidence to support that request.

Someone has to refer the child to the Paediatrician (or, I understand Clinical Psychologist in some authorities) - in my authority that can be the school, or the GP (or HV for U5s), or a SaLT or physio etc. Obviously the parent has to give permission, or take their child to the GP in the first place with their concerns. The school doesn't need to be involved if the parent takes them to the GP, but if the school and parent think the same, then a referral from the school is often a bit more powerful, as they know the child better than the GP does.

CAMHS don't get involved in an Autism assessment in our Authority. CAMHS are massively understaffed and it is very, very, very unusual here for them to be involved with a child at 6 - but I know that varies in different parts of the country.

Arachnidplant Tue 09-Apr-19 22:28:27

It is very different in different areas.

Near me* it would be GP - CAMHS - paediatrician to get a diagnosis. There is approx a 2 year waiting list to get to the paed. Significant school support is not a requirement for this.

In terms of education though, EHCPs are based on need, rather than diagnostic labels, so schools shouldn't have to wait for the diagnosis to act**. An EP can come in and assess/support the child's learning needs.

*but only near me. Different NHS trusts commission services differently.

**within reason, depending on how expensive the support recommended is.

Arachnidplant Tue 09-Apr-19 22:31:09

My local camhs works with children aged 0-18. (They have an early years section)

RageAgainstTheVendingMachine Wed 10-Apr-19 07:30:35

Thank you so much all of you, particularly you good for all the info flowers cake

BackforGood Wed 10-Apr-19 19:00:15

You are very welcome smile

Penguinpandarabbit Wed 10-Apr-19 19:16:58

Got a child with undiagnosed ASD and in theory can access diagnosis via NHS. In practice its proving difficult - first area waiting lists were 2 years, kicked out at first appointment with DH, complained given second appointment they agreed autism likely and put him on the 2 year list. In meantime we moved. New area 2 months before doctors would give us appointment as said non-urgent then they said they don't do ASD referrals must go via school. School said they don't do them. School backed down and did one, NHS refused it as had no ticked box to say discussed with child - has taken 9 months to get to here. Then they have said they never see anyone without them undertaking an NT parenting course first and then long waiting list. They basically make it as difficult as possible to get help.

School have put help in place anyway, had to fight for it, but now have it and support wouldn't change with a diagnosis but if we got a diagnosis and a EHCP we could access a different school with autism cabins. He is unlikely to get EHCP though - school were sending him home once a week as they can't manage for 6 months but last two have managed. School have brought in Educational Psychologist but they do not diagnose.

You can also go private for a diagnosis but sometimes LA will not accept them.

RageAgainstTheVendingMachine Wed 10-Apr-19 19:45:08

Jesus penguin that's fucking depressing sad mind my language

Penguinpandarabbit Wed 10-Apr-19 19:58:54

It is depressing but thankfully he is improving at school but I have to research everything myself and advise school. Also means I can't work other than from home at the moment as I have to be permanently here for when school decide they can't cope. Though the cat is most impressed with me staying home to be with her all day. The number of SEN kids being home educated not via choice is shocking but education budgets are being hit and SEN funding isn't ringfenced so it gets raided. I have a complaint into the LA about diagnosis around here but its been 4 months and only an acknowledgment. Some areas are better than others. Our primary were amazing at help, paid for a TA from own budget and this school is getting there but they tried to get rid of him at start saying he needed a different school. They all love him now though grin

RageAgainstTheVendingMachine Wed 10-Apr-19 20:25:43

They tried to get rid of him at start saying he needed a different school

Hi Penguin
If that happens and a school say they cannot meet his needs or make reasonable adjustments, where do you go from there?
Do they have a duty of care to find a different school for you or do you just refuse to leave? Or do they just call you non-stop and exclude non-stop? Who would step in to help find a 'suitable' school and would this be a Special School that may not exist/have places or would the LEA provide a home tutor?
Sorry, so many questions.

Penguinpandarabbit Wed 10-Apr-19 20:47:41

When the Head said it to me I just replied well you find a school that can cater for a very bright autistic child that he can access and I will send him. I think there isn't one and she agreed and said we should give him a chance. Then she told senco to give him all the support they could. They have never officially excluded him, its all unofficial - these aren't legal but they do not having sufficient staffing to cope if he runs outside. So we get him. They record it as unauthorised which is annoying as they make us do this.

A school would normally not help you find another one but should help you get an EHCP which can specify another one. Its very hard to get these. A school cannot refuse to take your child, they can exclude if their behaviour warrants it and that could lead to a permanent exclusion but they are supposed to take autism into account. I did call the LAs SEN team, they were very helpful and told the school they can't behave like they were doing. It goes on a fair bit, and no one stops it. Though at primary we had illegal exclusions and last one got fed up and reported it they made it official but then stopped them. You do need to know your rights and complain when needed though its best to work with school so always make sure I compliment the good too and acknowledge its difficult. Always useful to ask on here.

ChidiAnnaKendrick Mon 01-Jul-19 22:01:20

My sons have a diagnosis. They were both referred through the GP and neither gets the tiniest bit of help. Zip. Zilch.

DS2 has an EHCP application in progress.

There is no support or help to be had outside of school for ‘high functioning’ kids like mine.

Absoluteunit Fri 05-Jul-19 16:57:00

My daughter has just been diagnosed via a NHS community paediatrician. She was referred at her 2 year check and was diagnosed at 5 in reception. It took a long time because school have been saying all along that she is fine there but that doesn't reflect what the experts who observed her at school say.

She has had no support at school and doesn't even have an IEP. I have asked for one now and have a meeting coming up to discuss.

Does anyone know what I can do if school continue to refuse to help because she doesn't need it? She does act ok at school but it seems like she holds everything in there and lets it all out once she is home. The diagnosis report says that she will need more support especially with the social side.


Punxsutawney Sat 06-Jul-19 23:59:04

Ds is 15 and currently being assessed for ASD. He was referred by his school to the child development centre in July last year. He had his ASD assessment last week with a speech and language therapist. We are waiting for the report and another appointment to see the paediatrician for a decision on diagnosis.

Ds is on SEN monitoring at school. He has an SEN plan and a little support, although it has been a fight to get it. The Senco has said they will put him on the SEN register if he gets a diagnosis. Don't know what difference that will make if I'm honest. I'm pretty sure he would not be entitled to an ECHP. I am concerned that the small amount of support he is getting will stop at the end of this academic year because of school budget issues. Ds starts year 11 in September and we are under no illusion that it is going to be an incredibly stressful year. I just hope Ds can cope but if year 10 is anything to go by I have my doubts.

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