Don't know why to do about potential ASD...Need mixed views

[NoGoodAtHousework]

I'll apologise now as this is probably going to be a long one. I don't have anyone really that I can get a balanced view from, I have people who completely sympathise with the ASD aspect and others who are under the impression its twoddle and DS is just being lazy... Not helpful when I need to makes me big decisions. Its more of a WWYD really in my situation...

So, my son, who is 10 has never been a great achiever at school, however, in his previous school it was flagged to me (and we had raised concerns to the doctors in a sensory capacity and for toileting issues) that they thought he may had ASD or something in that arena. We went through various paediatric assessments and the like and eventually they came back with a letter that he did not hit enough of the markers to be deemed as needing a full assessment (note: this was done during the worst of the covid pandemic so how they came fully to this conclusion on a child that was not in school for most of the time is beyond me, but hey ho). We put the whole ordeal and all the questions in a little box and forgot about it and just took a lot of his quirks to be (often frustrating) personality traits.

Fast forward to a year later and he has started a new school. Following just over a term in, I get a call into school to discuss DS. I assumed it was going to be a bit of a telling off on my part to get him to pull his socks up in preparation for SATS, which is how it started, but then I was side swiped by the fact that his new school think he may be autistic. Now this seems to have come completely unprompted for the second time in the last few years. Which has got me thinking that there may be something going on that was previously missed. His school are deeply concerned that secondary school is going to blow his mind and are worried he may struggle to cope if theres no additional support (I'm aware that I am very lucky to have a school who seem to really care about this).

As some background, he doesn't present traditionally with the 'usual' traits, however, when I write all his quirks down, they do fit within a lot of the characteristics that can be used to identify ASD such as: missing social cues (coming across as socially awkward at times or adversely, way too full on), overwhelmed by situations like when with a big group of overexcited kids, needing his own time, enjoying playing alone, toileting issues until very late on, finding deep pressure calming, rigidity of thought (heavily supported and identified by the school), sometimes obsessive behaviour and interest in topics and so many other minor things. When you take any of them individually, they are just a personality trait, when all together, the SENCo started to see more of a picture that she thinks shows ASD which definitely needs support in certain aspects of school.

Given that we have 6 months until secondary school, we have taken advice from the SENCo there who has said that if he goes up with a diagnosis/assessment or at least something ongoing then his support options are far better. His SENCo now is happy to send him up with information on the the support he's currently getting, however, apparently the funding is tighter there and obviously there will be more children so he won't be able to be focused on so much, if you know what I mean.

Now my quandary, we can go down the normal assessment route which ultimately will be months and months of waiting if not years, by which time, he might have fallen apart at secondary school, or he might have flourished....who knows... OR I can pay just over £2k (I can afford this but its still a lot of money) for a private assessment where it will happen and we will have feedback by the time the summer holidays is here, in setting assessment will be undertaken within his current school where they know him and know where his quirks lie BUT it may all come back as he is just lazy...or it might come back that he has ASD and needs the support... WWYD?

I'm sorry this is so long and heres so much i've probably not said. Just wanted some other opinions. I have terrible pre-emptive mum guilt that if I don't do something and he is assessed traditionally years down the line and it turns out that he needed supporting for something and wasn't...it makes me a terrible parent that I could have done something...

anyone?

If your son is autistic the transition to secondary may be challenging. If you can afford it I would go private asap.

Support is supposed to be needs led, not diagnosis led. You could apply for an ehcp without a diagnosis, to pin down what support he needs to access education - as part of this process he would be assessed by an educational psychologist, a speech and language therapist and an occupational therapist. There is lots of advice on sossen, ipsea etc on how to go about this.

However I found the diagnosis did help get support mainly because it gave me confidence to argue for what is needed as I knew what was 'wrong'. So id be inclined to pay if i had the funds because the transition to secondary is important

I would pay in these circumstances. But either way, imo of course he is not just lazy. If he has a number of markers for asd then the likelihood is he's on the spectrum. Asd is really just a collection of symptoms. They're going to be there regardless of any diagnosis so I'd start accessing support ASAP.

Absolutely go for private assessment ASAP. I did- worth every penny. NHS took years and were awful. Don’t wait.

Then push for ehcp through the school.

Secondary can be very hard for children with asd. Adolescence can make behaviour challenging and anxiety levels high. A diagnosis will make sure you are able to push for the help needed.

Unfortunately a diagnosis won’t mean you get much help- you’ll have to do a lot of reading and find what help he needs. Then keep communicating and checking with school that he’s getting what is needed. As a parent of a child with asd, I’ve found you need to be extremely assertive (bolshy).

Thankyou, this confirms a lot of what my thoughts currently are. I have asked about having an EHCP done now, but they said whilst it can be done you have t have so much more evidence, which given he is at a new school they just don't have at the moment and we don't have a lot of time.

@Anoopkin this is what my SiL said...time to roll my sleeves up!

I know a diagnosis or assessment won't 'fix' things but it might help with accessing the support he needs that I don't know about.

Check that your LA will accept a private diagnosis before you spend the money. If you look for local groups for parents of DCs with SEN on facebook, you'll be able to ask the question there and get the real answer.

Do also bear in mind that support is supposed to be based on need rather than what the piece of paper says. In practice though, I dunno how true this is.

And obvs you need to start looking out for the right secondary school, whatever happens.

the school is the best in the area and is the lead school in the trust that his primary is in so we have a really close link for transition which is great.

The private option I'm looking at is recognised by the LA (in fact, its the 'expert' the LA use) so its all good there. I did consider the cauldwell charity, but I can't do the mean tested and the fully funded is pretty eye watering through them. Although I hear it is an amazing service

As someone who discovered I had adhd and asd as an adult and struggled all the way until my 30s, I'd advise to pay for the assessment. A diagnosis won't change him or fix him, he will always be this way because that's how his brain is wired. It will however allow him to get the support he needs and will cut out the "lazy" labels. To me that's the most important part , for his self esteem and sense of self worth. I was always called lazy and distracted and made to feel inadequate for not being able to function like my peers. It damaged me and even though I know now why I struggled , being made to feel that shame still lingers in the back of my mind.

Hi,
We had a similar situation with similar presentations except first school just kept complaining he was chaotic and lazy. Secondary picked up immediately on ASD. We went for a private assessment but it was nowhere near that expensive - about £650. Can you shop around?

It is incredibly helpful to get an assessment. We didn't realise it at the time, but afterwards, all teachers were told and asked to make certain allowances for DS (eg phones not allowed in lessons but he was allowed to get his out to photograph homework on the board as he couldn't process it fast enough to write it down at the end of a lesson, or remember any verbal instructions.) Teachers were also asked not to speak in metaphors to him (e.g. No, 'SmallGinger, get your skates on/pull your socks up' but instead, 'SmallGinger, pick up your bag, we are leaving for swimming now' etc.

Going forward, it gave him extra exam time and extra funding for uni, as well as counselling and time management support at uni, all of which has been very helpful.

Thankyou everyone for your views. Its been very helpful

We are going through exactly the same thing. DS2 is 11 and in Y6. I’ve paid privately. We had the initial assessment which was £200 and only if they felt it warranted further investigation we’d have to pay the rest. He is very bright but incredibly hard work. He has to control everything. She thought that it’s fairly likely to have ASD so we are proceeding with next round of assessments. I’m wondering if you could just pay for an initial assessment and then go from there? Feel free to PM if you want to chat as they sound quite similar.

Pay privately if you possibly can.

Was ADHD ever considered? There can be considerable overlap with ASD, even with social struggles. If inattentive and not hyperactive it could be more easily missed.

You are lucky to have a proactive and supportive SENCO. She sounds great. We have one who seems to actively block diagnosis for children and “doesn’t believe in labels”

I would also say shop around - we paid £900 for an ADHD assessment and that involved prescribing though the assessment is shorter.

@ihearttc are you able to share by PM who is doing your screening and assessment? DS doesn't score in the impaired range on ASD screening tests but shows a lot of traits. We have only found clinics that do the full thing so it would be good to not pay full whack!

Shop around for the private ASD ax. As a PP mentioned, many will do the screening forms for a lesser amount, and only progress to the full assessment if indicated. From what you’ve said, I think j assessment would be helpful.

@drspouse

Yes that’s fine, I will PM. We are in East Anglia if that helps at all? Our SENCo recommended her as I wasn’t prepared to wait nearly 3 years to see someone on the NHS. She is ironically the same consultant he would have seen at our local hospital so if we get a diagnosis it’s valid (wrong word but hope you get what I mean!) I didn’t think she’d get anything from our first consultation but she took a very detailed medical history and details of his early years. She then gave him a task to do but chatted to me and him during it. He was very calm and spoke to her normally in my opinion but she said that he had very very limited eye contact and his responses to her questions were almost pre rehearsed. He has learnt what responses to give to questions. She then asked him a question (about my Mum who has dementia) in a very roundabout way and he had no clue what she was asking, which really shocked me. He is a very complicated chap who to an outsider looks super confident but his whole life is spent in a ball of anxiety over being in control. The consultant said he must be absolutely exhausted each day trying to mask all the time which id never considered before.

I think that it is very unusual for the school to come out and say that unless they are very sure your dc has an issue. They are also right that without a diagnosis he is unlikely to get much help at secondary. I think it is very common for kids to be unofficially supported very heavily at primary and then get into all kinds of difficulties at secondary. Being with one teacher who also has a ta at primary means he is getting probably plenty of adjustments anyway but this will not be the case at secondary. I would do the assessment.

OP - have a look at this - comic strip explanation of autism - it is very useful

themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

Get him assessed ASAP. My ds has lost year 7 and nearly all of 8. School in year 7 had him down as naughty. Year 8 in new school had to know him 6 months before they could help with the forms. Haven't even heard if he will even get an assessment yet. He is crying out for help and nobody cares.

Sounds very like my DD. Assessment privately done, but more like £700 for an initial wide ranging assessment, with a company in Kent. They checked for ADHD, add, ASD and anxiety. We could have then asked for an ADOS assessment to be fully sure, but we've got all the support we need with the initial one, was the DSM 5 and she met all the criteria. Also they diagnosed dyspraxia.

Secondary school, lockdown and puberty made all of her quirks 10 X worse and it really affected her, screaming violent meltdowns etc...things are so much better now. It's a 3 year wait here on the NHS and with her masking it at school, there's no way I would have got the diagnosis easily.

I work in the inclusion department of a secondary school. Based on the information that would come to us from a primary school and parents we would say a child is on the ASC pathway. They would be added to our SEN register and have the same reasonable adjustments as a child with a diagnosis. In any case, reasonable adjustments will be of benefit even if he does not end up with a diagnosis.
Ensure that your DS has additional transition visits to secondary school and knows which adults he can go to for support if required.
Perhaps a visit to the secondary school and a discussion with the SENDCo there might benefit you too as his mum.
Good luck with your journey.

@Theghostofchristmasarse

Can let me know who you used for the general assessment please?

I started to go down this route with my dd. Lots of different things were suggested but separately ASD was suggested by three different professionals. She is almost mute at school so there is so little evidence from there it's difficult. However, I can't afford the £2000 so felt deflated.
I spoke to school who were extremely sympathetic and supportive and immediately did a range of things to help. The main problems I've had are at home but they put things into place as they recognised that school was a trigger for some if the issues I was having and that she was masking.
That in itself was enough to get support and they also did a couple of other screening type activities to see if she'd qualify for support in exams.
They have said they'll continue to support diagnosis or not (as they should) and have been really good in their communication.
If you afford the assessment I would go for it. It doesn't depend on it but it does help direct the support. It's taken me years to work out what to do to support my dd and I believe a diagnosis would have sped that up.

You can apply for EHCNA now, don't wait. That will help to get the support in place ASAP, probably not in time for September though. You don't need a diagnosis to apply, SEN needs to be suspected. The threshold is low so given that school have made this suggestion either school or you can apply. Diagnosis can follow, given that waiting times are so long. You can contact IPSEA for advice and SENDIASS are sometimes good depending on the area. I did it the wrong way round, was given the wrong advice by school so ended up paying privately for ADOS assessment as my DS would have finished school by the time we got it done via NHS, should have got EHCP first.