Does this sound like autism, ADHD or something else? Don't know where to turn

[Falcon1]

I've posted about my DD before (e.g. previous thread here https://www.mumsnet.com/talk/special_needs/4348307-What-is-wrong-with-my-child) as we've been concerned that something is wrong for a while. Really hoping someone can offer some thoughts/suggestions as I'm so confused.

Essentially, things have improved massively. She is now 'meeting expectations' for her age (although way below where her sister was at the same age), the meltdowns are much less extreme and she has friends. However, the issues are:

-She has meltdowns at school where she gets very frustrated about not being able to do things.
-She has a close group of friends but still tends to lose her temper and lash out at them when things don't go her way.
-She is still very emotional. We get lots of tears and 'I hate my life', 'this is the worst day of my life', 'I hate you', 'everyone hates me' over very very small things (e.g. the TV being turned off, not being able to do up her tie, her shoes not fitting). Really out of proportion emotions that she struggles to control.

• She is frequently physical with her older sister when losing control
• After losing control she is very contrite and beats herself up (often hitting herself, which is really worrying).

-Her sensory issues are much improved, but she still hates any clothes that are 'scratchy'. She still won't eat lots of foods. -Still struggles with remembering words, names, dates etc - basically learning is an uphill battle and her memory is poor -She has very low self-esteem and thinks she's stupid, despite our best efforts to tell her otherwise

I've spoken to the school SENCO who thought that she might be dyslexic (she has always struggled to read and spell) and that meltdowns at school are down to frustration she can't articulate herself in the way she wants to. However, a dyslexia assessment said there wasn't sufficient evidence to diagnose dyslexia.

I then asked the SENCO if ADHD might be possible. She said there wouldn't be enough evidence to suggest this from school's point of view, although she did acknowledge that she may be masking at school (hence the meltdowns at home). My sister has ADHD and I think I show many traits so I think this is possible. However, school said the waiting list for assessment is 3 years and she doesn't exhibit enough symptoms at school for it to be accepted anyway? I'm wondering if going down the 'right to refer' route via the GP is something to explore.

I spoke to my GP about a potential autism assessment back when she was 5 and we were really struggling with her behaviour and meltdowns. He practically laughed me out of the door saying if she had autism you'd know about it. In lots of respects she doesn't fit the profile I guess, as she's very chatty, sociable and affectionate, but I don't trust this GP's judgement as he was very old school.

I just don't know what to do next. Maybe nothing? Or am I letting her down by not pursuing some sort of assessment? And if an assessment- what for? Autism or ADHD, as they are different pathways? If it wasn't for her terribly low self-esteem and genuine upset on a pretty much daily basis, I wouldn't worry too much. But I can't help thinking her teenage years are going to be horrific if this is what her primary years are like. I want to make sure she has the right support in place. Any advice would be gratefully received and thank you for making it this far!

Speak to the GP and SENCO again. I think there is enough to look at further assessment whether that is ASD, ADHD or both.

Was the dyslexia assessment just a screening or assessment via a dyslexia assessor? Or was it a comprehensive ed psych assessment which is far more thorough and looks at all issues?

What support is the school providing? Support in school is based on needs, not diagnosis. Did you request an EHCNA?

It was an assessment by a dyslexia assessor. I was advised by the SENCO not to use an ed psych as she said their reports aren't as comprehensive in her experience.
School have a lot of kids with SEN in my daughter's class so she is not seen as a priority for extra support, particularly now she is 'meeting expectations'. However, she has had lots of ELSA support to help manage her emotions and is taken into smaller groups for extra help with writing/spelling. I haven't requested an EHCNA as school said it wasn't needed.

The SENCO is wrong. It is the opposite.

The school must make their best endeavours to meet DD’s SEN. Request a meeting with the SENCO, DD needs more support.

Schools often incorrectly say an EHCNA isn’t required or DC won’t get one. Request an EHCNA yourself.

Depending on where you are, an EHCP is very unlikely to be issued based on what you describe.

The threshold for getting one is incredibly high.

I would ask the school if there is outside agency support they can provide though - they might have a team for children with possible ASD, or ADHD, who can come in. An ed psych could also be used to observe any potential concerns, and with any outside agency, parents can normally meet with them too.

If nothing else, if you were hoping for an EHCP, outside agency involvement would definitely be needed. Likely would be for a referral too to show that all avenues have been explored.

OP may have to appeal, but it is possible to get an EHCP for the needs described wherever OP lives. The law is the same in all LAs, even those who think it doesn’t apply to them. The only lawful threshold for an EHCNA is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP.

School’s EP time is extremely limited and in many schools an EP assessment outwith statutory processes is unlikely.

OP, you may want to get saving for a private assessment. The test for ADHD is QB check (at least, that's the one we did). ASD is ADOS which includes a speech and language assessment.

It cost us about £2,600 for both I think. We did eventually get to see an NHS paediatrician 3 years later and he basically rubber stamped the private report.

You can also ask the GP (a different one, I suggest!) about Choose and Book (which is what I think you mean by 'right to refer'?).

Of course school are meant to meet needs not diagnoses but no-one took us seriously until DD was diagnosed. She sounds a bit like your DD. Issues from age 3, diagnosed at 7, now 11 and doing well although I'm praying that secondary transfer and adolescence aren't too bad!!

Thanks @Phineyj that's really helpful. Did you get the assessments done by the same provider or two separate ones? Can I ask what prompted you to get the assessments (what issues was your DD having)? And what impact has having a diagnosis had on your DD?

Yes both with the same provider. I was pretty sure from observing her closely during "lockdown learning" 2020 that she had ADHD (I'm a teacher, which helped). I wasn't sure about the ASD but DH is probably on the spectrum as well as (probably) other family members so I figured our "normal" might not be... She had very disregulated often violent behaviour and really noticeable differences between home and school (the "shaken Coke bottle effect"). DH and I were having much more problems parenting than any of our friends seemed to, despite trying really hard. Lots of sleep issues. We nearly got divorced tbh.

It was really really difficult and we felt very alone and that no-one understood.

DD was quite excited to have a "condition" as she thought that she'd be allowed to eat sweets in class like her friend with Type 1 diabetes! Then not so keen once she realised! However, after getting older and lots of patient work from various class teachers and SENCOs, plus play therapy, she has quite good insight. She has melatonin for sleep.

She's got into cycling and football which takes the edge off the hyperactivity and does music theatre, for which the ability to go from 0 to 60 in seconds is also of use!

We changed how we parented and dropped a lot of expectations. It was quite difficult socially as we live in a grammar area and lots of her friends have taken 11+ and private school entry tests. Not suitable for her.

I wish you lots of luck.

Just to add a couple of things: her school is good but only took us seriously once we had the diagnosis. It's also been helpful with EHCP (those are hard to get...start in year 4 at the latest).

But most of all it stops you feeling like shit parents all the time because it's evidence you're dealing with something outside the norm.

I think DH probably has the inattentive type of ADHD and he is very gentle and reasonable so parenting an explosive, hyperactive child has been exceptionally hard for him.

Thank you @Phineyj ! I'm really pleased your DD is getting the help she needs. I thought something was wrong from nursery, but lockdown learning really shed a light on how difficult our DD is to teach. She would make one small mistake and then screw up the paper in anger, have a meltdown, or just sit there crying saying how stupid she is. It was awful. It's so hard though as she really doesn't fit the ASD or ADHD criteria neatly - only some of symptoms match. For example, she is not at all hyperactive (in fact, her favourite thing in the world is to zone out in front of the TV), but she struggles to focus and has emotional outbursts. Similarly for ASD, she is a real social butterfly - very gregarious and outgoing - and has always slept well, yet gets very anxious, has sensory issues and really struggles with change in routine. It's so confusing! And I totally get what you mean about feeling like a shit parent - yet DD2 is so so different from our calm, studious and compliant oldest that I know it can't just be down to us!

Would you mind telling me who you used for the assessment? Was it someone local or a national provider?

Nothing you have written rules out ADHD or ASD. Some with ASD are outgoing and crave social interaction, and some with ADHD have the inattentive type.

Personally, unless money is no object, I wouldn’t seek independent ASD and ADHD assessments now. I would request an EHCNA and save your money in case you need to appeal that where you may think an EP, OT, &/or SALT assessment would be more helpful.

Do you not think though @KeepGoingThomas that without diagnosis/diagnoses it's a bit "mum says that..." ? It was a great relief to us that a paediatrician also saw the differences.

OP, this is the organisation we used: www.starjumpz.com/

I found them through recommendation. I later discovered that they are well known to SEN parents throughout the whole region. Yet my GP had not heard of them!

My DD is also very sociable and her levels of physical activity aren't unusual for a sporty child - but she seems to need exercise to regulate in a way not all DC do.

She's quite socially skilled in terms of making friends but has frequent misunderstandings - but she is charming and hilarious and they always seem to forgive her.

I have no other child to compare her to but have watched with close attention the girl next door growing up - 2 years younger but can already do things academically DD can't. Which figures as ed psych said DD is two years behind typical year 6.

@Phineyj I am not saying a diagnosis isn’t important; it is for many reasons, but when money isn’t endless (and for most it isn’t) prioritising saving money until an EHCP with the necessary provision has been secured makes more sense. A diagnosis isn’t required before EP, SALT, OT, etc. reports because they look at needs. Without a diagnosis independent reports won’t be ‘mum says…’ anymore than they would be if there was a diagnosis.

EHCPs are based on needs, not diagnosis. Many have an EHCP without or before a diagnosis, a diagnosis alone won’t result in an EHCP, and an EHCP is the key to support. Parents may have to appeal, but that can equally be the case when there is a diagnosis.

For example, what happens if OP spends her money on an ASD and ADHD assessments then finds she needs to appeal, as many do, during the EHCP process and she desperately needs e.g. an OT assessment but can’t afford it? The charities who sometimes fund independent assessments are inundated and can’t always help or can only partially fund an assessment or can only fund one assessment and more are needed. She could end up with a diagnosis but no more support than they currently have.

I suppose so. But you could end up with an EHCP and no diagnosis?

Plus there's the timescale. It took us about 4 months to get an appointment for the ADHD/ASD assessment, and the report back (I think waiting lists are longer now). We're currently 16 months into EHCP with another 7.5 to wait till the second tribunal. So minimum of 2 years.

I have a nasty feeling too that the EHCP system will actually collapse...

I think perhaps the best advice for any mum would be to do what they have to do to keep their job...SEN is costly! In £, time and relationships.

OP, your eldest might benefit from these books if she's a reader:

www.amazon.co.uk/Books-Collection-Know-Ways-Pieces/dp/0753890666/ref=mp_s_a_1_2?crid=18WBCK9XSMILR&keywords=can+you+see+me+libby+scott&qid=1704480012&sprefix=libby+can%2Caps%2C113&sr=8-2

The timescales to get an EHCP are exactly why she should pursue it ASAP. It is not a reason not to prioritise money for any potential appeals. An EHCP is the only way to guarantee support.

But you could end up with an EHCP and no diagnosis?

Unlikely, because OP could remain on the NHS lists which although long she will eventually reach the top, or she could save up again once the support required has been secured or, depending on income, she could look at Cerebra’s funded ASD assessments.

And, personally, if I had to choose between the two, I would rather have the support than the diagnosis because a diagnosis alone won’t give the necessary support.

It is a bit like if you only have money for independent assessments or legal representation you should always focus on independent assessments because it is those that will secure support. Representation can only work with the evidence in front of them.

I personally found it very validating to have a diagnosis (which also came with a long list of recommendations for how to parent, what school could do, a reading list etc) because I was in a very dark place at that point and my marriage was on its uppers. At one point we went to marriage guidance and after a few sessions the counsellor said "Do you realise that you've only talked about your daughter?!"

The paediatrician said at the end of the assessment that DH and I had done a good job. It cheered me up immensely.

The EHCP process is thoroughly dispiriting so it's important to be feeling mentally strong when you start on it, I think.

Anyway, a few more suggestions, OP.

The books '10 Days to a Less Defiant Child' and 'The Explosive Child' have some good strategies and 'Smart But Scattered' is good for working on executive function (these are all American but I found the advice relatable - just had to "translate" the school stuff).

We found NVR counselling very useful (for us as a couple). Yvonne Newbold is a well known name but we used New Leaf NVR.

If you Google "Your local authority name" and "local offer" you will find a list of local resources and support groups. Local parent groups will be useful for recommendations of assessment services if you decide to go down that route. If you can get there, Caudwell Children offer subsidised ASD assessments in some circumstances (there is an upper age limit of 11).

We found play therapy useful. I found a play therapist using the Owl Centre online.

When we eventually saw a paediatrician on the NHS he pointed us towards local children's services that you have to be referred to. However, apart from some online seminars everything has a high bar to access (e.g. because DD is doing OK no-one will see her) and the parenting courses are only on when we're at work. And we really really need to keep our jobs because we've spent over 5 grand on various SEN things (Thomas is absolutely right to advise thinking about your cash flow!)

It's lucky I personally kept my job as DD is entitled to a place at my school and I was completely in despair about how to find a suitable one otherwise.

personally found it very validating to have a diagnosis

Which is exactly why I posted I wasn’t saying a diagnosis isn’t important. I just don’t believe independent diagnoses should be prioritised over an EHCP when money is limited.

Yes, I meant Caudwell’s assessment, not Cerebra. Trying to do too many things at once. Sorry OP.

Thank you all so much for your thoughts. @Phineyj I'll look up Starjumpz and those books, thank you! It all seems like such a maze to navigate so all help is really appreciated.

I spoke to my GP about a potential autism assessment back when she was 5 and we were really struggling with her behaviour and meltdowns. He practically laughed me out of the door saying if she had autism you'd know about it. In lots of respects she doesn't fit the profile I guess, as she's very chatty, sociable and affectionate, but I don't trust this GP's judgement as he was very old school.

Sorry, meant to say, I find the above appalling ^^ The GP is totally wrong.

I think you mean 'right to choose', not 'right to refer'. We used right to choose. Got an ADHD diagnosis for free within around 8 weeks (would have been quicker if GP not messed up referral!). Definitely worth considering. But we found the OT and SALT assessments the most useful.