DS just diagnosed with ASD and ADHD privately

[londonsquirrel]

Hi! I am a bit lost in terms of my next steps and need a bit of mumsnet wisdom.

DS is 9, we have tried getting him diagnosed for ASD through NHS at the age of 2 and then at 4 and were dismissed, because he masks a lot and does not really present a problem to the system. He is in mainstream school and they never saw any issues apart from his hand flapping when excited.

DH was diagnosed with ADHD in September and it kind of clicked that a lot of difficulties we are experiencing with DS are ADHD-related. Concentration span is really limited and somehow he manages to complete tasks at school. But when at home I have to constantly remind him about everything (which annoys him so much), help him with homework. He just does not learn things as naturally as other kids do. We decided to go for a private diagnosis for ASD and ADHD, as DH saw such a huge benefit from ADHD meds.

I am trying to figure out whether mainstream school works for DS at all. They have a couple of SN children in class, so obviously not a lot of attention. He is functioning within the expected range. But then that range is so big! Whenever I talk to my son about maths, I realise there's such a mess in his head... Plus there is the whole ASD side of the issue - he masks a lot and then when DS gets home I get an explosive child who stims endlessly. I am contemplating a private school with lower class numbers, but them I am thinking maybe I am overreacting? (probably being gaslighted by the system for so long does not help). Would an Ed Psy report be helpful in this case? How do I decide?..

Have you spoken to the SENCO at school? What support are they providing? An EP assessment would be a good idea. If DS needs more support than the school can provide have you considered if an EHCP is required (you may have to appeal but you can get one for DC who masks)?

Independent schools aren’t all supportive of SEN, so if you go down that route you will need to ask lots of questions beforehand. Many also charge 3xtra for additional support.

Thanks @KeepGoingThomas ! I have chatted briefly with SENCO when we decided to go for a private assessment and asked the school to fill out reports. DS has never been on the SEN list and the teachers have never flagged things up (apart from stimming). Now we have a new SENCO starting in Feb and I'll have an appointment with her following the diagnosis report. I am not entirely sure what special support might look like even - he is in the "expected" range and does not cause any particular troubles. But then I do a lot of heavy lifting helping him with homework... So I am basically doing myself a disservice. Will EP be able to suggest the areas for SN support?

There is definitely attention span problem that affects his achievements and overall understanding. Last week I've asked his swimming teacher why DS is not moving to the next level - he has been over a year on the same level now. She said that the problem is with paying attention to what he is doing, she calls his name much more than any other name. Yet the school teachers do not notice anything?.. I am very confused... What are the schools looking at?..

Speak to the SENCO again because the school should be providing support. Support is about more than academic ability and the coke bottle effect you describe is due to unmet needs at school. If school was easier for DS, home life would improve too. An EP will be able to look at DS’s needs and the support he requires. Unfortunately, it isn’t uncommon for schools not to see problems,

Is he worried about rule breaking? I find when children have ASD and ADHD they can be very anxious and worried more than ‘just’ ADHD about rules and sanctions which causes a lot of anxiety. Is he low level fidgeting without being disruptive to peers. I think often the need for more breaks is not well appreciated when this is the case. are you concerned about his mental health at all. When you say maths is a mess more understanding of why would be good. My child with ADHD is going to need some more scaffolding with maths we have decided to medicate because of the impact on her emotional well being of being so lost but have an NHS diagnosis so it was more straight forward. Also thinking of privately paying for a dyslexia assessment as this often co occurs with ADHD and not sure of some of her muddling is due to further additional needs. Also ASD kids often have spiky cognitive profiles so maybe something like processing speed could be making Maths hard (obviously adhd and missing bits is an obvious contributor but a good understanding of the why makes it easier to support). Just because there is a diagnosis doesn’t mean a one size fits all support approach is best. If Ed psych can assess that would be great but it’s a very compromised resource. Sorry that was a a bit jumbled.

Special schools need EHCP’s and are not always the best option (but can be). School will need to evidence support in place and that this has been evidenced as insufficient if you want to look at support over and above this so definitely start with the SENCO to start with increased support and understanding. Get it in paper even if it’s a follow up email of what has been agreed and discussed. They need to show a graduated approach to support to evidence need. I really like Neurowild resources around diagnosis and different brains to show children in case that would be helpful for your DS.

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. It is possible to get an EHCNA when the school could do more, but won’t or cant. A policy of requiring 2/3/4 APDR cycles is unlawful.

Sorry @KeepGoingThomas I didn’t mean to misrepresent anything I’m just thinking if there is no record of any support and the child is seen to be meeting targets it will be much harder to evidence and even with EHCNA it’s unlikely to go much further but absolutely not lawful to require evidence as some schools will never be putting in max support required under EHCP threshold. Sadly.

I agree it will be harder and may require an appeal (or 3!), but it is possible. Either way speaking to the SENCO is a good way to start.

Thanks for your reply @spinningplates2024 !
He is afraid of breaking the rules - I feel the school has instilled it into him. He fits into the structured school environment. He has some stimming behaviours, like hand flapping or humming. He contains them more or less at school, but then we are now getting increased stimming after school, which affects us a lot as parents. He usually stims when excited or when he achieves something. I thought about potential adjustments, but I am not sure how a break would benefit him? It is not that he would be stimming during that break, because the moment of excitement is now gone.
As for the maths - he does understand things and algorithms. But then some things just do not come naturally to him. Like... We have 4 apples and we are sharing them between 2 kids. Would each kid get more or less if we are sharing them between 4 kids? I feel that ADHD difficulties with sustained intellectual effort affect everything... Does EP usually evaluate for slow processing? Or is it something that I need to ask for separately? I totally get that ASD diagnosis and even ADHD diagnosis manifest differently, I am trying to find a way to support him best and I feel lost for now. If the school does not see that my son is struggling with maths I am not sure how I can get them to support him? He just need extra attention because he does not pick things up as naturally as other children do...

Hi OP, I have a similar child (outside of school, she swims at a high level, plays in a football team and is very physical and energetic). Her sports reports from school are underwhelming! They just don't seem to see the same child.

I wanted to recommend a resource called Smart But Scattered which has a lot of good tips. It's American but quite easy to "translate" into UK terms.

Also, I'm a secondary school teacher and I'm sure you're aware but teachers do not get a lot of training in SEN and teachers tend to be very young on average in the UK and many do not yet have kids of their own.

You can probably assume in most situations that you know more than they do! I have certainly learnt a LOT more from working with my own DD than I ever have about SEN at school - it helps me with my students.

Come over to my EHCP support thread as I'm afraid those letters will be in your life soon (but on the plus side that will get you the Ed Psych evaluation).

Thanks for your reply @Phineyj !
As you said - nobody really pays attention or understands SEN... And it feels like it all falls onto my shoulders - chasing, persuading, figuring out, explaining. We went private for the diagnosis because I was gaslighted by the system for so long. Now I realise I wasted precious time and I am already out of breath, because I have been supporting my child's SN on my own. I have been putting a lot of effort in to see only little results. It makes me feel inadequate parent. But there is a whole marathon ahead... I feel I am just not cut out for that! How do you keep it all together?

I work part time and view the SEN stuff as an unpaid part time job. I started a thread on here last summer and have found it really helpful to be able to find others in a similar situation that way. I unload on my best friend a bit. I have given up on my mum and sister understanding. They just don't get it.

I have changed my attitude to education and parenting.