I am an "autism expert". Ask me anything.

As long as you can get over the doorstep - and I think a letter from DD would do that - most services are very familiar with a mismatch between school and home perceptions, esp in able primary school aged girls. In our service, we send someone from the team out to observe for themselves in school, and we know what kind of subtle signs we are looking for.

The only ones we use as shorthand to make it clearer what we are talking about within the team are PDA and 'old Asperger's type'.
PDDNOS, semantic pragmatic disorder, those kind of old names I suspect would be subsumed under our wider understanding of manifestations of autism and the subtle but profound way some of the Triad can be expressed (eg it's common for a person to have no problem with novelty or change on a big scale, but to find mental re-evaluation or flexibility very hard, for example finding what they perceive as injustice pertaining to themselves very consuming, or find ambiguity in school work questions cause a freeze response. This would fit with the flexible thinking requirement of the spectrum, but I am not sure we'd have recognised it 20 years ago).

High functioning I don't like. It means autism without accompanying learning disabilities, not that you are a genius. And even if you are academically able, it doesn't mean you will sail through academically because of the way the curriculum works (it's application of knowledge based, rather than expression of knowledge based, which means many able autistics experience a performance deficit, not a competence deficit). It also minimises the potential challenges of being an autistic person in the modern world, which can be great, even if you are very clever.

EOTAS (education other than at school): if the young person has an ehcp, or is going through that process, most local authorities will go with parental preference unless there are no places available, or they are asking for something incredibly expensive or potentially harmful. Whilst an EP might make a recommendation, it's the parental preference that has a higher status if you like.

For me as an EP to recommend EOTAS - usually this would be in discussion with parent, they have to be in agreement with the plan. Usually this would be in cases where the young person's mental well-being was being so damaged by school (or usually, thoughts of school since most are in EBSA by then) that the idea of any kind of attempt at reintegration to any kind of setting - including specialist, if that were a possibility - is too traumatic. Also where the young person has a clear preference and engagement in online learning, or where parent and child clearly say it's what they want and I agree it would be appropriate.

I can't answer the camhs question, sorry, I am not involved in commissioning and don't work in camhs. I expect it boils down to overwhelm and underfunding.

Parent carer forums are often useful to find free support; ours runs various free courses for parents. Sendiass will also help you navigate having a child with SEND. The local authority Local Offer is also useful - in many areas you can sign up to a newsletter (email) which tells parents about initiatives locally.

Hotfair, you are quite a long way down the list, but very briefly:
Because your daughter has initiated the request for an assessment, this should be respected. Ask her to write a letter about what she saw in the "spark" programme that she felt was like her, and confirm that she would like to find out if she is autistic. I highly doubt that any pathway would turn down a referral generated by the young person - we certainly would not. You would obviously need to send supporting evidence also.

It's worth calling your local pathway to ask if they accept parent referrals. Many do, but don't shout about it.

No, sorry, I managed to miss a couple of questions, my apols.
Will get on to it in the morning!

I have a specialist role so I am atypical.

Assuming you are talking about the usual EP role.

Our job is to work on difficulties and improve them. We have to work within the law as laid out in the Code of Practice. (Currently on 2014 iteration but being revisited and redrafted). This requires us to work on an assess-plan-do- review cycle in interventions.

Basically a school calls us in, we assess the situation in some way (doesn't have to be a formal assessment, could be a consultation, observation, team around the child meeting, or combination). With the key stakeholders (parent, teacher, senco) we devise a plan based on our assessment. The plan is "done" and we meet again to review it, tweak it, adjust it, and so on.

We also work on training and strategy and a variety of other roles.

We have different ways of working in different areas depending on the commission model. Some local authorities have cut their EP team right back and they basically spend all their time on statutory assessment with the most serious situations. This is highly unsatisfactory for all concerned. In many areas there's a move to schools buying in EP time. Wherever we are, we only see children that someone asks us to see - in best practice the priority order is jointly constructed by setting and EP when considering all sen needs in a school at a planning meeting. We are sadly a scarce resource (about 200 train a year, aging profession etc).

Am now just starting questions posted on page 3 so bear with me :)

I see what the aim is, but they are very simplistic really and no substitute for a full assessment. I am not familiar with the specific one you mentioned, but in general. I think in women especially they probably lack specificity and sensitivity - Do they publish this sort of data?

I think as an adult it's up to you whether you think having clarity about your neurotype would make a big difference to you. The diagnostic criteria, as I have said elsewhere in the thread, do include an expectation that the person's life is impacted by their "symptoms". Many diagnosed adults find it life changingly validating, others are happy to just "assume". I think it's most worrying when people have no idea they might be autistic and either have no insight into their "issues" or assume they are weird or broken in some way. For youngsters I think it's really important as I have stated elsewhere in the thread; for adults who suspect they might be and "act as if" it's probably more equivocal.

I don't think it's very common for learning disabilities to be misdiagnosed as autism (ie there aren't actually learning disabilities) though this can occasionally happen where communication is profoundly impacted (like for the chap who wrote 'the reason I jump'). It is the case that people with learning disabilities have a greater chance of being autistic as well, so it's not uncommon in conditions such as Downs or other conditions associated with LD.

I think people outside the field don't really get how much autism diagnosis is based on balance of probabilities, evidence base, history - it's a nuanced thing, sometimes it's genuinely not that clear (and sometimes it really is very clear!). We try to get it right, there's a lot of genuine grappling and integrity in the diagnostic process in my service, but we do definitely get it wrong sometimes - in both directions.

I would say not always, esp in classical autism which can be associated with prematurity, learning diffs and genetic anomalies, ie not familial inheritence. But it's not infrequent in the autism-without-learning-difficulties population. As others have said on the thread, quite often a youngster's diagnosis prompts a parent to explore an autism diagnosis themselves.

Hyperlexia is not particularly common, and actually I have seen more boys than girls, but I wouldn't swear by the occurrence, it's not something I have studied.

Well it's easier to diagnose classical autism earlier, but not much before 2.5 or 3 - unless there's an older sibling with a diagnosis and a clearly similar trajectory. The 2 year check is one of the early spaces where parents discuss their child's development with health visitors and initial screening is supposed to take place.

I believe there have been various studies investigating trying to bring this (earliest age) down, but the validity reduces a lot . Toddlers with significant speech delays or experiencing neglect can look similar at a very young age.

Caveat - I don't work on the early years pathway much.

It's probably not processing. This is used to explain why autistic children don't manage to write much when people don't quite know why. Handwriting can be slow but a quarter of "normal" is more complex than just processing or writing speed.

It's more usually a combination of ambiguity of question causing inhibition of responding in young people who are sensitive to risk in communication, and executive functioning issues around task initiation, planning, or perspective taking.

You can get extra time anyway if he's diagnosed as long as it's the usual way of working.

I am sorry too.

I am going to investigate the issues you raise more and try to not be too defensive of my personal experience.

I don't think mild and severe are the right descriptors, but I do think the community you describe needs more consistent representation and consideration.