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.

@JumpyHoop your son sounds so much like mine!! He has just turned 5 and received a very quick diagnosis of ASD. I was actually very shocked as I had been told that it could take years for a diagnosis to come through but he was referred through a pilot scheme but that's a another story! He has hearing issues that I felt should have been given the chance to resolve before the diagnosis was given. Anyway, like your little boy, my DS is happy, passive, sleeps well, eats well, and is sociable albeit can be shy. His main issues are around speech. He loves numbers and letters and is absolutely brilliant at counting. Some of the facts he comes out with are amazing. Like you, I see this as a strength, not a weakness. He is attending a very good MS and I have requested that the diagnosis be kept completely confidential. The only ones who know are the Principal and the Senco. As far as anyone else is concerned he has a speech delay due to his hearing. I don't see how the diagnosis helps him. We are getting him support through both private and NHS SALT which is where his difficulties are most apparent. I want people to assume competence in my son, not assume incompetence due to a diagnosis. I saw it happen at his nursery. Because he has speech delay, they assumed incompetence in so much. I completely understand where you are coming from!! Go with your gut.

No, not everyone or even a large proportion of the population is somewhere on the spectrum! That is not what the spectrum is.

Why would you need to mention to DS you thought he had Asperger Syndrome but doctors changed their thinking? Asperger Syndrome hasn’t been diagnosed in your DS’s lifetime and he would not have been diagnosed with it anyway because he has a language delay.

Why do you have a problem with DS being diagnosed with ASD because it is abnormal/not typical development but you don’t have a problem with DS having an EHCP and being non-verbal, which also are not typical development? Having a diagnosis of ASD doesn’t prevent positivity, love, appreciation of strengths, etc. any more than any other diagnosis e.g. Asperger Syndrome or speech delay or HI or ADHD does. DS reading reports isn’t unique to the ASD assessment (for which a report will be written whether you carry on or not), he will be able to read other reports, so what makes the ASD report different? Why would reading an ASD diagnosis report be any different to an Asperger Syndrome diagnosis report? They are actually very similar types of reports and the ADOS was used as part of the assessment for Asperger Syndrome, just like it is for ASD. Reports for the EHCNA focus on needs. If you have applied for DLA, that very much focuses on difficulties.

I think most teenagers who received an Asperger's diagnosis would have understood it was a subtype of autism that's now been subsumed into autism spectrum disorder. But as @BrumToTheRescue said above, no one's diagnosis changes. It's just not a diagnosis that's given anymore.

As for the reason, it's to do with a greater recognition that autism is a spectrum disorder i.e. that across the diagnostic criteria that must be present, autistic people will present with different support needs in each. So once you acknowledge that, you don't need a different term for "autism without speech delay and/or learning difficulties." Also, as our paed explained, the separate diagnoses unfortunately meant that some people diagnosed with Aspergers were thought not to have the support needs that autistic people do have and so were placed in difficult environments and expected to just cope.

This article by the NAS is a good explainer (and about the historical problems with the name Aspergers): https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism/asperger-syndrome. As it notes, some people may struggle with the change due to identifying strongly with an Aspergers community and because, as autistic people especially, they find change hard. But not because they can't understand the change or it's intellectually confusing.

You're right that the autistic spectrum covers vastly different presentation and a lot of people (though still a minority and relatively small %) find themselves on it - autism isn't as rare as was once thought. But a spectrum isn't a line that everyone is on somewhere, and it's certainly not true that everyone can be on it or is "a bit autistic".

Most parents of autistic children have to explain their DCs particular strengths and support needs to every new teacher. Lots of people I know produce a dos and don'ts sheet. And yes, you have to advocate for him with teachers who assume he's not capable. But it feels like you're both saying "I don't want people to assume he's not capable because he's autistic" and "he shouldn't be diagnosed as autistic because he's capable"?

Thanks to everyone who commented on this thread, I found your input very helpful - and made me think about my preconceptions/misconception.

Following DS’s ADOS screening, his previous paediatrician had left the practice - and he saw a different paediatrician last week. The week before had his EHCP annual review.

In the review - the SENCO, speech therapist, his teacher were all expecting an ASD diagnosis. I think his initial paediatrician was intending to diagnose without the ADOS screening, as she felt she already had sufficient evidence : but I insisted on the screening.

He wasn’t diagnosed with ASD, the new paediatrician saying there wasn’t sufficient evidence : although told me to keep monitoring.

She said his needs are primarily language based and a delay here would impact his social skills.

I had previously asked his speech therapist about DLD, but she was expecting an ASD diagnosis. I’ve contacted her now about DLD assessment.

What I’m finding VERY confusing is that one paediatrician would have diagnosed, and one wouldn’t/didn’t.

This is so important as IF it had been diagnosed, it would have been a life long diagnosis that MAY have been incorrect.

This isn’t right - surely??? How many potential misdiagnosis's are taking place with ASD??

If you have an ASD assement and they decide he doesn't meet the criteria then it's very hard to get the diagnoses later on. Your 1st pediatrician liked his "odds" of getting the yes and your 2nd didn't. They both clearly thought he is borderline, it's that simple, it's their opinion/guess of the likely outcome of an assessment. It's not a case of "misdiagnosis" it's just whether or not he'd meet the threshold.

I am autistic and I have chosen to not get diagnosed as an adult as I am very self aware of my needs and am confident in advocating for myself so I don't see a point this late in life.
My 9yo is also autistic, his struggles are sensory and social due to rigid thinking with "rules and right and wrong". He is very bright and excels in everything else. He does have friends and is very kind and caring. He is a wonderful child. He is currently undergoing assessment to get his official diagnoses as this can only benefit him at this point in his life.
When looking at EHCPs and required need they need to look at the very worst day for your child, what they would be like if you stripped back all support and accommodations made for him so they can see what support he needs. This is essential but it sucks seeing only the struggles or "negatives". But by them knowing and using this information they can ensure he is given the support he needs to thrive and be happy.

Also, when it comes to schools and
offering places we look at the EHCP, their behaviours, and their needs. We do not look at diagnosis. I've been on the panel that decides whether or not we can "meet need". If you think your child is being presented incorrectly then it's the EHCP you need to look at.

You don’t know the initial paed would have diagnosed if the ADOS (which isn’t a cut and dried diagnose/don’t diagnose test but forms a significant part of the big picture) wasn’t suggestive of ASD. Sometimes what happens is a paed thinks they will be diagnosing but once all the information is collated they change their mind when they have all the evidence in front of them.

@BrumToTheRescue

In my last appointment with the initial paed, she said she’d taken him off the ADOS screening list because she felt she had sufficient evidence to diagnose. I kicked up a fuss and said I still wanted the screening to go ahead.

Yes, and you don’t know she would have diagnosed having had the ADOS results.

@BrumToTheRescue

But had I gone ahead with her initial thoughts, and not challenged her decision to take him off the list - he’d now have an incorrect diagnosis.

Or maybe not. Honestly, it is clear you didn’t want a diagnosis whether DS had ASD or not (although an AS diagnosis would have been acceptable, bizarrely, even though he wouldn’t meet the criteria for that), so you have what you wanted.

@BrumToTheRescue

I wanted him to have the right diagnosis.

I’m not sure why you are calling my thoughts bizarre - or saying ‘got what you wanted’.

I hope you don’t have that attitude in your professional capacity. I haven’t been rude to you at all, so I think it’s unnecessary.

But you would have been happy for DS to be diagnosed with AS, which wouldn’t have been the correct diagnosis because of the language delay. That is what is bizarre.

You did get what you wanted. You didn’t want a diagnosis. That was evident throughout the thread.

Personally I find your perception of ASD rude and unnecessary but there you go.

@BrumToTheRescue

You’ve just stated ‘would have been happy for a diagnosis’ and ‘didn’t want a diagnosis’ in the same post?

My perception of ASD is confused.

This article rings true to me :

“The overly flexible configuration of diagnostic criteria fuels what I call the promiscuous diagnosing of autism today. The result, a recurring theme in this article, is the rampant misdiagnosis of autism. In over 30 years of clinical experience in this field, I have found the following childhood developmental difficulties to have frequently been misdiagnosed as autism by practitioners who applied DSM-IV, DSM-5 or DSM-5-TR criteria:

• mild to moderate emotional difficulties.
• more serious emotional difficulties which appeared to be related to psychosis, as later confirmed by a specialist.
• oral dyspraxia, a condition in which the hard-wiring between the brain and oral musculature is disconnected, leaving the child able to understand language but unable to produce it.
• moderate to profound hearing impairments which had gone undiagnosed, or, if already diagnosed, whose impact had been misinterpreted as autism.
• selective mutism.
• brain abnormalities; genetic syndromes; Rett’s Disorder—all later confirmed by medical specialists. Alternatively, a child’s brain or genetic abnormality may have already been identified, but the impact of that abnormality had been misconstrued as autism, because the child’s resulting communication problems mimicked the broadly configured symptoms of autism.
• miscellaneous developmental difficulties, despite normative medical test results.
• developmental delays in children who evidenced normative potential, but who simply needed more time, patience and understanding to reach their potential. Some needed targeted therapies for speech, motricity, learning skills, or emotional well-being to close minor developmental gaps.

Unfortunately, prematurely and erroneously misconstruing as autism virtually any delay in anticipated age-level social/verbal communication is an all-too-common phenomenon, with the autism misdiagnosis then negatively impacting on the entire trajectory of a child’s developmental path.”

“It is important to remember that not every developmental difficulty has a specific label. Nor do all developmental difficulties require diagnostic labels. It is far more important to understand what is happening to a child physiologically, emotionally, and contextually than to label that child. This is a clinical reality that is very difficult for practitioners working in a symptom-focused and diagnosis-based framework to internalize and appreciate. I believe that effective clinical work can only begin when we put the autism diagnosis aside and strive to reach, understand and assist the child behind the symptoms. That is what counts.”

Author : Shoshana Levin Fox

My last post was a follow up to my last but one post where I said it was clear you didn’t want a diagnosis of ASD but would have been happy for DS to have been diagnosed with AS. I didn’t feel the need to add ‘of ASD’ again since it was following on from my pp and your post in between. That’s why they were part of separate paragraphs in my last post. I’m sorry if you didn't understand that.

In England, the ICD is mostly used, rather than the DSM. Hence why the majority don’t get ‘levels’ as part of their diagnosis here. Some of the listed conditions in your pp are actually well known to often be comorbidities. Several of the others are often ruled out here as part of the ASD assessment. For example, where there are signs of genetic disorders (e.g. altered facial features, co-existing medical needs, significant family history, a LD) an array CGH is often done and may be followed by WGS. Another example, it isn’t uncommon for hearing tests to be carried out where there is diagnostic uncertainty, particularly when diagnosis is made in the early years. You can’t compare the diagnostic process here to other countries.

One can diagnose and strive to understand and meet the needs of the child behind the diagnosis. This is why the majority of support (e.g. EHCP, DLA, social care support) in England is based on needs, not diagnosis.

@BrumToTheRescue

So I initiated the EHCP and pursued the ASD referral without much scepticism initially. I don’t think it was about me being happy/unhappy - it was about DS getting the right support and help to improve his quality of life/access to education.

My scepticism started when the (20 week I think?) deadline was way overdue, it was getting closer and closer to his reception start date. It was very difficult to contact his case worker.
There were things I was questioning in his reports : but didn’t challenge as I felt I wasn’t the professional, and didn’t - at that time - realise the impact it could have.

June last year, I was anxious : I didn’t know where DS was going to school, which impacted my job/breakfast clubs/any induction sessions for him that he’d miss/meeting his first teacher.
I don’t know what the LA send to schools when it’s EHCP placement, but the case worker advised me not to continue with my first choice school (a faith school) following the form they fed back on regarding his placement.
I phoned the second choice school, and the conversation I had with the SENCO she was also planning on rejecting? on the placement form. However, she said my phone call had persuaded her to see DS at his preschool. And after that visit she accepted? the placement but with reservations. It was never suggested to me that I should be looking for schooling - other than mainstream - until that point.

Since then - I’m sorry but I’ve questioned everything. And scrutinised any report for potential inaccuracies.

An ASD diagnosis should be an accurate reflection of who the child is and help to improve their quality of life.

I think this is what was happening to DS

“Unfortunately, prematurely and erroneously misconstruing as autism virtually any delay in anticipated age-level social/verbal communication is an all-too-common phenomenon, with the autism misdiagnosis then negatively impacting on the entire trajectory of a child’s developmental path.”

And @JumpyHoop

I’m 100% sure that his Speech Therapist was assuming ASD. There were plans to end his Speech Therapy because I believe - the Speech Therapist believed he had ASD, so further therapy would not be impactful because his needs are ASD related.
However I feel I now have a very strong case to continue his speech therapy and pursue a DLD diagnosis.

You are conflating EHCPs and diagnosis. EHCPs are needs based, not diagnosis based. And, as you were told previously, consultations happen with or without a diagnosis. They must happen legally. They are part of the process. Objections raised during consultations are part of the process too and are just as likely with or without a diagnosis. LAs act unlawfully. That isn’t anything to do with diagnosis. And the route of redress is via SENDIST or JR. It would really help you if you learnt more about EHCPs. IPSEA and SOSSEN are good starting points.

Of course reports should be accurate. No-one has said otherwise. It is a normal part of the EHCP process for disagreements to happen and parents to want amendments. This is why you get the opportunity to make representations and to appeal following finalising.

Of course a diagnosis should be accurate. No-one has said otherwise. But it is quite clear from this thread you didn’t want an ASD diagnosis even if it was accurate (yet would be happy with an AS diagnosis).

SALT should be in the EHCP, so couldn’t just stop without a review of the EHCP. LAs/NHS look to stop therapy for all kinds of reasons. If you think they were going to use diagnosis as an excuse, they could just as easily use something else, including not having a diagnosis. Honestly, LAs will use any and every excuse, including contradictory excuses. It is about saving money.

But why - there surely must be a link between needs and diagnosis? Otherwise, why was his screening, paediatric appointment, up coming diagnosis all discussed in his EHCP meeting with his speech therapist present. A significant outcome of his diagnosis now being continued speech therapy support which is very much part of his EHCP. I can’t see why it’s wrong of me to link the two. Diagnosis matters for the support services involved.

Nowhere on this thread, as far as I’m aware - have I stated that I would be ‘happy’ with AS and not ASD. I think you’ve been swayed by a comment by another poster who thought I believed in good autism, and bad autism which is NOT something I said, and perhaps a projection of someone’s frustration - on me. I do think there is a difference between ASD that can be supported in mainstream, and ASD that needs more specialist educational help. Just before my son is due to start reception is the wrong time to hear ‘actually we think we can’t accommodate him here in mainstream’ - and I want to know well in advance before I seek a KS2 place if I need to get him to a school with potentially a long waiting list, transport needed, away from the friends he has made - and how that is funded/the impact that will have on my job.

I commented that I know someone who had /has an AS diagnosis - but if he was being diagnosed today, that diagnosis no longer be considered a stand alone condition. This is from Julia Micklewright who runs Aspie ““To me, it’s a disservice to people not keeping Asperger’s,” she says. The spectrum is a big place to land. Everyone is lumped together but they have such different needs and concerns. “If you are diagnosed with autism it doesn’t explain much about what your actual condition is,” she says. Asperger’s was, and still is, a useful label that helps people orient and understand themselves.”

I’m not really ‘happy’ with any of it. It’s been a really distressing couple of years, with people very ‘happy’ to tell me I’m wrong, or that I don’t understand, or that I’m not using the correct terminology, or I need things explained to me - or very ‘happy’ to put me very much in the position where I shouldn’t challenge because I’m not an expert.

And all I want is for my child to be understood, have access to education, and to have a good quality of life.

EHCPs are needs based, not diagnosis. You don’t even need a diagnosis to get an EHCP. Two people with the same diagnosis can have vastly different special educational needs and reasonably require very different special educational provision to be made. The reports from diagnostic assessments can feed into providing evidence of needs and the SEP required, just like assessments and reports that are not part of the diagnostic process feed into providing evidence of needs and the SEP reasonably required.

to get him to a school with potentially a long waiting list

Again, you are misunderstanding the EHCP system.

SALT can be part of EHCPs diagnosis or no diagnosis. If you think otherwise, you misunderstand the EHCP system.

I haven’t been swayed by any other poster. You posted “10 years ago I could have been persuaded to diagnose him with Aspergers : only for that now not to be the ‘done thing’.” This comes across as you would be happy for DS to have an AS diagnosis (despite him not actually meeting the criteria).

Two people with Asperger Syndrome can have vastly different presentations. The diagnosis alone doesn’t tell you what their needs are. Two people with an autism diagnosis under the old system can have vastly different presentations. Two people with ASD can present very differently.

I’m clearly an idiot who misunderstands everything then. My poor son.