ASD and difficulty with mainstream application. Will the diagnosis help or hinder?

[JumpyHoop]

DS age 5 is in mainstream. On application for reception, two schools tried to refuse his placement stating they couldn’t meet his needs. He has an EHCP.
DS had an ADOS assessment and have just had the report which places him in moderate autism category, one point away from high.
He is doing really well at school - can read, write, do numbers : all at either expected or exceeding level. He has made friends.
His behaviour is not disruptive, he is passive.
His main issue isn’t that he is almost non-verbal (except when reading).
The ADOS report was very detailed and there was very little focus on any of his strengths.
My thoughts are : I need to apply again for school placement at KS2. He comes across on any report as very, very needy. But he is actually more passive, is happy and I don’t he does need a lot of extra support in class.
Part of me wants to not engage with an ASD diagnosis any further as I think he is teachable, and I don’t want schools to use this as more ammunition to reject his placement.
I’d rather leave his diagnosis until his school placements are secured.
I’m not sure what extra benefit he’ll get - he has an EHCP.

I am a senco and I can't see how a diagnosis could affect any decision as to whether I could meet needs at mainstream. The EHCP is the document that outlines interventions and support needed. That is the only document usually sent when schools are consulted.

I would therefore recommend that you base the diagnosis decision on whether you think a diagnosis could be useful for DS in the future.

Thanks @Thisismynewusernamedoyoulikeit

It will feed into his EHCP I think? “DS has a diagnosis of moderate autism.” The EHCP currently in place emphasises needs relating to his speech. If the future update states moderate autism too, I think it will make him appear more needy.

The reason I don’t think it will be useful is there is currently no autism diagnosis on his EHCP. If the update states that he has ‘moderate autism’ plus the speech and language needs I think a school - based purely on paperwork would say they can’t support his needs. In person, he is really not as bad as he comes across on paper. His teacher said this to me on my first parent’s evening.

Do you agree with the support needs identified in the ADOS report? I think that's the big question. If you think the report isn't an accurate presentation of your DS's needs, I'd see if you can speak further about it with the doctor that produced it.

Personally, I think refusing the diagnosis is quite a high risk strategy. DS's needs are likely to change over time as expectations at school change. Some of the needs the report identifies may become more of an issue over time (or less of an issue, you just don't know). I think it would be better to accept the diagnosis and challenge schools that refuse the placement but that you think can meet need - it sounds like you may have done this last time?

Does the ADOS report suggest therapies that would be useful for your son that he's not currently getting, that could be written into the EHCP e.g. social skills, OT? If so, it's useful for that.

Is there a reason why he won't just move up to the juniors of the infants he's in, if he's doing well?

With an EHCP, other than settings that are wholly independent, the LA must name your preferred placement unless the LA can prove:
-The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person; or
-The attendance of the child or young person would be incompatible with the provision of efficient education for others; or
-The attendance of the child or young person would be incompatible with the efficient use of resources.

On its own having a diagnosis of ASD wouldn’t fall into any of these categories. If the LA can’t prove the high bar for these reasons, the school can and must be named even if they object. The provision in F of an EHCP is based on needs, not diagnosis, so even if DS isn’t diagnosed, the needs should be in B and the corresponding provision in F.

Personally, I think a diagnosis is important for understanding yourself and others understanding you.

You also don’t know what the future holds and what support DS will need as he gets older. Some find the wheels start to fall off later in primary or on transition to secondary and they need to consider an ARP or SS, some of which require a formal diagnosis. You don’t want to have to delay moving to an appropriate setting because you first need a diagnosis.

@BusMumsHoliday

Thats a good question. Reading it again, no I don’t really agree. I think it presents him in his most negative light. I also think he is coping in mainstream. Definitely happy, not disruptive, has friends, can achieve academically. I’ve adjusted my hours of work so I can support him outside of school - and he does enjoy learning. I really want to have a positive ‘can do’ philosophy surrounding him, proactive support that makes a difference, doors to be opened for him - rather than shut. I want him to be included, not excuses to exclude due to financial/resource constraints faced by schools.

@BrumToTheRescue

“The setting is unsuitable for the age, ability, aptitude or special educational needs (“SEN”) of the child or young person.” From my experience I think schools see a wriggle room here. They do have an option to say they can’t support so find another mainstream school that can. I know the LA would set the bar high, and can write in the name of the school : but I don’t want that negotiation, and then the school to say “well he now has a moderate autism diagnosis and we can’t support that here” - and for the LA to be swayed. I think schools will try and avoid taking SEN children if they can/potentially have a ‘choice’ - due to perceived demands on resources. I don’t think he does make big demands, and I don’t want his EHCP to present him as more needy/in a more negative light.

The bar for the LA to prove that is higher than you are thinking. The negotiations during consultations are just as likely to happen without an autism diagnosis as with because the EHCP is based on needs, not diagnosis. The consultations are part of the EHCP process so you can’t get away from them.

Schools don’t have a choice about admitting DC with EHCPs. They must admit pupils whose EHCP names the school. Non-wholly independent schools can’t avoid that. The LA (or SENDIST when in appeals) must name the school if it is parental preferred except in the circumstances I listed above.

@BrumToTheRescue

But the consultations would happen because there is a ‘grey area’. What if say - he is now (as a result of the diagnosis) having his needs ‘upped’ on paper - to be closer to that bar.

He seems to be coming across far worse on paper then he is in reality.

I blame myself, thinking I’ve chased this/kept all appointments/sought early help - only for him to come across as very needy. I could have left it. I could have not engaged. I initiated the EHCP process - had I not, I think he could have been overlooked, not picked up until later on - and I’m wondering if that may have been actually better for him?
His KS2 school is a feeder school from several other schools, and if the school goes to the LA saying “we can’t resource the EHCP’s coming in from all these feeder schools” - then he could be moved??

But the consultations would happen because there is a ‘grey area’.

No, that’s not how it works. The consultations would happen even without a ‘grey area’. The school must legally be consulted during the draft process.

What if say - he is now (as a result of the diagnosis) having his needs ‘upped’ on paper - to be closer to that bar.

Needs in EHCPs are based on needs, not diagnosis. A diagnosis alone won’t up the needs in B.

I initiated the EHCP process - had I not, I think he could have been overlooked, not picked up until later on - and I’m wondering if that may have been actually better for him?

Not having an EHCP wouldn’t have helped DS. Having the EHCP ensures he has his needs met. Without the EHCP he wouldn’t have the support he requires and his needs wouldn’t be met.

His KS2 school is a feeder school from several other schools, and if the school goes to the LA saying “we can’t resource the EHCP’s coming in from all these feeder schools” - then he could be moved??

The threshold for the LA to prove incompatibility is far higher than you are imagining. The LA has to prove something specific. They wouldn’t just be able to say the school can’t resource the EHCPs (for which the LA is responsible for ensuring the provision is provided and the school has the correct funding - EHCPs can be fully funded). The bar is higher than an “adverse effect”, “impact on” or “prejudicial to”.

I blame myself, thinking I’ve chased this/kept all appointments/sought early help - only for him to come across as very needy. I could have left it. I could have not engaged. I initiated the EHCP process - had I not, I think he could have been overlooked, not picked up until later on - and I’m wondering if that may have been actually better for him?

I think that what's more likely to have actually happened is that you have done an amazing job at creating an environment where he is supported at home and at school. As such, he's succeeding because he has accommodations. You haven't overestimated his needs.

I don't want to do down the abilities of your son, who sounds wonderful and like he's thriving at school. But I was also surprised at quite how many things my son couldn't demonstrate in his ADOS. Realising the extent of his struggles has been a bit upsetting, even though I fully expected the diagnosis. His report talks about "significant" differences and needs because that's the diagnostic criteria - he's not autistic without that. And he's a child that most people wouldn't realise is autistic if they met him in an environment that suits him.

The diagnosis process is hard, even if you initiated it, even if you expected to be diagnosed. Do you have a support network?

Thank you @BusMumsHoliday

I think this is my issue. Yes the ADOS screening did ‘down’ his abilities. But why, why, WHY is it necessary to ‘down’ his abilities and categorise him?
It was so negative about my son, whereas I see - and focus - on his positives.
Granted - he is not particularly interested in dolls/imaginative play. So does that mean he needs to be categorised by an adult invented term : he is ‘autistic’??
His ‘normal’ is numbers/lego.
So if I took a child by his understanding of the world/abilities and said - ok this child is not ‘normal’ because this child cannot recognise numbers to 1000/add/subtract.
Is that fair?

@BrumToTheRescue

Thank you. Except I’ve lost my faith in the under resourced and under funded system.

The system is underpinned by law and there are processes in places so parents can enforce the law.

Diagnosis is important for understanding oneself and others understanding you. DC who struggle with academics such as maths should be assessed and any relevant diagnoses diagnosed. Just like a child with a physical condition needs assessment and diagnosis. Autism is no different.

Thanks @BrumToTheRescue

Enforcing that law requires time, finances, delays and a reliance on paperwork : paperwork which portrays him in a negative light, and - IMO - is not an accurate reflection of who he is.

And so far I’d say that diagnosis/or assumptions around that diagnosis has led to misunderstanding. Two schools attempting to reject his placement, with the school who then placed him saying ‘he’s not as bad as he comes across on paper’.
The autism spectrum is so broad, with no categorisation within that spectrum - that leaves him open to being misunderstood, stigmas, judgements etc. 10 years ago I could have been persuaded to diagnose him with Aspergers : only for that now not to be the ‘done thing’. Given that this is a lifelong diagnosis, something that no one really knows the cause of, something that appears so subjective, something that has been open to misinterpretation already : what benefit will it give to my child? I want a diagnosis help him, to open and not close doors.

The maths/physical diagnosis's you describe are more an objective diagnosis. E.g you can directly assess and support/less likelihood of misinterpretation.

Similarly I’ve found speech therapy incredibly useful and had a very positive impact on DS.

Yes, enforcement take times, but not to the extent you are talking about. For example, you are talking about transition from infant to junior school, normal appeals are taking around a year, but an appeal for transfer from infant to junior school would be a phase transfer appeal and those are much quicker. If you submitted an appeal soon after receiving the phase transfer EHCP in Feb of Y2, it would definitely be heard before the September of Y3.

If the situation is something that needs JR rather than appealing the content &/or placement in the EHCP via SENDIST, whilst not immediate, that also isn’t as long as many people think and you can request an interim order.

Appealing to SENDIST is free. You don’t need representation. If you can’t afford independent assessments and aren’t eligible for legal aid, there are charities such as Parents in Need who can fund assessments.

After the pre-action letter, most types of JR cases are brought in the child’s name therefore they can be eligible for legal aid in their own right. If you aren’t eligible for legal aid yourself, SOSSEN can help with a pre-action letter much cheaper than anyone else and for some things like not sticking to timescales/failure or deliver SEP they are free. Many find the threat of JR is enough.

Appeals relying on evidence ‘paperwork’ is why independent assessments may be needed if you didn’t agree with some/all of the reports. But, as I posted, nothing you post would meet the threshold for the LA to refuse to name your preference. Appealing B&F to better reflect DC is common. It is just as common for those without a diagnosis.

Schools objecting to consultations happens with or without a diagnosis as you have already found. Not having the diagnosis doesn’t make it any less likely because objections are based on needs and the SEP, not diagnosis. And it is not always about the child but politically motivated and about money.

I have already explained the reasons why I think diagnosis is important. IMO it is shortsighted not to diagnose.

The maths and physical diagnoses don’t always have more objective assessments. To suggest they can be less misunderstood is a misunderstanding of some diagnoses.

If you mean DS is almost non-verbal as opposed to having SM, he wouldn’t have been diagnosed with Asperger Syndrome even before the switch. AS was diagnosed in those with an IQ above 70 (i.e. no co-morbid learning disability) AND no language delay. Those with a language delay to the point they are described as ‘almost non-verbal’ would have been diagnosed with autism (that would include those with what was previously described as ‘high functioning’ autism and those with what was termed classic autism).

Thanks @BrumToTheRescue

In terms of Asperger’s, I was thinking more of another family member who was diagnosed with this about 12 years ago. He was diagnosed later than my DS, and although he was late talking - was verbal by the time the diagnosis took place.

The family member went to a secondary independent school, and I’m pretty sure his parents had to almost ‘hide’ his diagnosis in order to secure a place. He thrived there. And now : he has just completed his masters degree and is applying to do a doctorate. Similar to DS in that he had zero interest in imaginary play, but loves computers/maths etc. And now that diagnosis is what?? obsolete?? something else??

The ADOS screening focussed on speech, imaginary play, creativity etc and that’s just not him. Had it focussed on numbers, lego, following patterns, fitting jigsaw pieces he would have stormed it. My understanding is that there are many different areas of intelligence - and because he’s are more likely to be maths orientated doesn’t mean he can’t succeed in life or is ‘abnormal’. I also don’t want to give him the message that he is ‘abnormal’. He is also one of the happiest children I’ve ever encountered and - no way - am I going to let any adult expectations of ‘normality’ destroy that.

Your family member’s diagnosis isn’t obsolete or something else. Why would you think that?

Diagnoses made under previous versions of the DSM/ICD don’t just disappear because the DSM/ICD changes. Just like those with EDNOS diagnoses still have that diagnoses even though more recent ones call it something different.

Just because your family member has a masters degree doesn’t mean his AS diagnosis is any less valid. Being diagnosed as autistic doesn’t equate to not being intelligent, academically able, being able to go to university or succeeding in life. I also have an autistic DD who is a PhD student. Her academic abilities don’t make her less autistic.

DS will still be the same person even if he has a diagnosis. A diagnosis of ASD doesn’t make anyone ‘abnormal’.

The ADOS screening focussed on speech, imaginary play, creativity etc and that’s just not him. Had it focussed on numbers, lego, following patterns, fitting jigsaw pieces he would have stormed it.

I think you are misunderstanding the ADOS somewhat. The scoring criteria are based around the diagnostic criteria. It isn’t just about the physical content tasks. It is about how DC do the tasks in relation to the diagnostic criteria. So looking at things like joint attention, anticipation of routines, response to name. If DS didn’t do a construction task (which isn’t about the DC’s physical ability to complete the jigsaw but rather things like if/how they ask for the remaining pieces or do they attempt to just take the last pieces despite the HCP’s hand on them, pointing, eye contact, facial expressions) then it suggests he did module 1 and that will be because of his speech.

@BrumToTheRescue

Because I think the term ‘Asperger’s’ is now obsolete or has merged into ASD.
To my mind, the spectrum is so broad to cover a huge range of personalities. His paediatrician used the term ‘if you’ve met one child with autism, you’ve met one child with autism’. To me, that just sounds confusing, subjective, open to misinterpretation.
And this is what I’ve experienced in trying to secure a school placement.
A year ago - before I experienced difficulty with school placement, I would have accepted the diagnosis.
Now, I see how it can work against him and I’m questioning it.
It may seem ‘easy’ to challenge the decisions made by schools/LA - but it’s not. I had many, many unanswered emails, being put on hold, people being on leave, communication being inconsistent or downright wrong. Waiting, delays, uncertainty. It was very stressful.
Thank you though. My plan is to challenge any paperwork that is not a true reflection, or that doesn’t acknowledge his positives or his progress. And to wait with an ASD diagnosis until his school placement is secured. I also will seek private speech therapy sessions.

@BrumToTheRescue

“Difficulties observed against a standardised group of children” - I am seeing a comparison of what is deemed ‘normal’ or ‘abnormal’.

But those already diagnosed don’t lose their diagnosis and it isn’t obsolete for those already diagnosed with AS. The updated terms to encompass all under ASD doesn’t change your family member’s diagnosis.

To my mind, the spectrum is so broad to cover a huge range of personalities.

Of course there is a huge range of personalities. Having an ASD diagnosis isn’t about personality. There is a range of personalities just like their is in the whole population.

His paediatrician used the term ‘if you’ve met one child with autism, you’ve met one child with autism’. To me, that just sounds confusing, subjective, open to misinterpretation.

That is still the case within Asperger Syndrome, though. People still have different needs and presentations. Just like with any other diagnosis. Those with dyslexia, asthma, eczema, epilepsy, FND… can have vastly different needs and presentations. That is why the majority of support (EHCPs, social care support, benefits…) is based on needs, not diagnosis.

Again, a diagnosis of autism will not prevent your preferred MS being named in I. The EHCP is based on needs, not diagnosis. I know exactly what is possible within ‘the system’. Parents don’t need to accept unlawful behaviour. SENDIST is not like the LA. It is perfectly possible to appeal and hold the LA and schools to account. Nowhere have I posted it is easy, but it is perfectly possible. I have DC with EHCPs and support others day in, day out.

If SALT is required it should be detailed, specified and quantified in F of the EHCP. There is no need to pay privately for sessions.

Autism does not equal abnormal. Why do you see autism as more ‘abnormal’ than other types of SEN such as those DS already has?

If you are using abnormal to mean not typical development, why do you see a diagnosis of ASD as more abnormal but not DS’s current SEN? Having an EHCP and being almost non-verbal aren’t typical development.

The ADOS screening focussed on speech, imaginary play, creativity etc and that’s just not him. Had it focussed on numbers, lego, following patterns, fitting jigsaw pieces he would have stormed it.

The ADOS screening is a test for autism. It's not a test for intelligence, academic potential, creativity, or ability to succeed in life. It's not even a test to give a balanced picture of a child's overall strengths and weaknesses. The test is designed to highlight the skills, ways of thinking, ways of going about tasks that are characteristic and diagnostic of ASD. Your DS was diagnosed because he meets the criteria for a particular neurotype and/or disability.

I can completely understand why you're concerned that some people will place limits on your DS because of his diagnosis. But I also think that you have some quite limited ideas about what autistic people can do and are like. You say you'd have been ok with an Aspergers diagnosis - because that's the good kind of autism? Because those people don't have support needs (they do)?

You also seem to be confusing the fact that a condition can have different presentations with a diagnosis being "subjective". Of course, expert judgement is required to decide if an individual meets criteria, but that's not uncommon for a medical diagnosis, especially a neurological one.

Reading reports about a DC can be absolutely brutal. They highlight areas of need because one of their primary purposes is to secure support.

I understand where you are coming from, OP and this is why I decided not to pursue an ASD diagnosis for my child when she was a toddler. I’m now so glad I didn’t as she has made the most incredible progress and I didn’t want her to be limited or, worse FEEL limited in what she could set out to achieve due to others’ prejudice. I really think you should follow your instincts here and do what you feel is right for your son. You can always have him assessed again in the future (or support him if he asks to be assessed when he is older).

@BrumToTheRescue

Thanks again and I really do appreciate all your are saying. You are very knowledgeable and you are putting everything across as it should be - and that’s reassuring, and helpful. I’m maybe being devil’s advocate. And it’s more my thought processes as I’m trying to decide what to do for the best.
And I hear your post too @Divasaurus. I nearly pursued a diagnosis for DS’s older DD when she was little but I have no concerns now she is in secondary school. And with DS, when he first started swimming I told his teacher he is waiting an ASD diagnosis. The teacher assumed he could do very little independently, gave him far too much help and he made no progress.
He changed to a different class - and I said ‘he has a speech delay but should otherwise be fine (no mention of ASD) - and he’s doing the same as the rest of the class and making far more progress.

@BrumToTheRescue Terms like atypical/typical sound much better/appropriate than abnormal/normal : but when I typed ‘atypical’ into Google the first thing that came up was ‘not normal’. And I would say - from the educators I’ve met already, 50% would see that difference and teach him accordingly, but 50% wouldn’t or would misunderstand his needs.
I think it’s more that I don’t understand what normal/typical is and am frustrated that there even needs to be a normal. Every child is different - and I think would develop best if they are surrounded by positivity, love, a full appreciation of their strengths, unique qualities, and learn to see the good in themselves and the beauty of life. And not to be told they are ‘not typical’. DS could read all these reports as a teenager - and see himself in a very negative light.

I struggle with the ASD spectrum being so broad, and a lack of clear categorisation within that.

I struggle with the cause not being well understood.

I struggle with thinking that perhaps we all, or a very large number of people could find themselves somewhere on the spectrum. So then what is ‘diverse’ and what is ‘typical’? Is it actually ‘typical’ to be on the spectrum.

@BusMumsHoliday I don’t see Asperger’s as a ‘good’ type of Autism. I’m more struggling with how it was seen as diagnosis, but now that has changed. And how that would be communicated to say a teenager. “We thought you had Asperger’s - but now doctors have changed their thinking and you now have (insert name of new diagnosis). Could this be confusing?

There shouldn’t be ‘good’ or ‘bad’ and it would bother me that there potentially could be that perception surrounding a diagnosis.