Am I right to think this could be ASD?

[FlamingoOrange]

I have concerns that my DS(8) may have ASD. I'm planning on referring him for assessment myself and I've been informed about all of the services and help I can access locally while we wait for assessment, which I'm really grateful for as I know it can be a bit of a postcode lottery with getting support for neurodiverse children. The thing is, I feel like a bit of a fraud accessing this help and asking school to make adjustments when he doesn't even have a diagnosis. I keep thinking what if I've got this all wrong and I'm making this big fuss over nothing? I think I just need some reassurance that I'm doing the right thing.

The things which make me think that he might be autistic:

• epic meltdowns when plans change, there are sudden transitions or things don't go his way.
• doesn't seem able to recognise or control his own emotions, easily becomes overwhelmed.
• emotional dysregulation.
• strong sensory issues - chews things a lot, is bothered by sounds that no one else has noticed, responds well to deep pressure when anxious.
• loves patterns and routines and can get very upset when things don't happen in the way he thinks they should.
• very bossy when playing with other kids, likes to be the one directing the play.
• from about 18mnths-5/6 years old his favouite game was lining up his toy cars (although lots of small boys like doing this!)
• clear unusual special interest as a toddler/preschooler but not so much now.
• family history of autism

Reasons I think he might not be autistic:

• very sociable, can make friends anywhere he goes and other children have always loved him.
• no issues with going to preschool/school.
• school have said there are no concerns there.
• he doesn't have meltdowns with his dad, only with me.
• he's super cuddly and loves hugs, holding my hand, sometimes holds hands with his best friend, no issues with eye contact that I've noticed.
• he's had a lot going on over the past 2-3 years - lockdowns, I had a late miscarriage, his dad and I split up, I'm now in a new relationship, we had to sell the family home and move to new houses, his grandad became terminally ill and then died shortly afterwards. However, he doesn't seem hugely upset by any of this and we've talked about it all a lot. The things which cause the meltdowns are the little things like going to a different park than the one we'd planned to.

I just don't know what to think.

Anyone? 😟

Access as much help as you can. If you are NHS waitlist is 3yrs, private about 6 months, maybe less.

You can apply for DLA for your child whenever a disability is evident. Doesn’t matter about the diagnosis, though getting an award would be easier with all the reports etc already in.

We had a lot of difficult circumstances around the time that DS was showing symptoms and initially put it down to that.

Having a child with autism is daunting. I certainly wanted to hope for the best and had difficulty coming to terms with it, that may be what’s going on with you coupled with all the uncertainly leading up to assessment.

Ps our DS is incredibly charismatic and seeks social contact… he just gets it a bit wrong sometimes in that he is quite bossy, domineering and can’t see others point of view. He had improved and can share now…

He also seeks contact, bear hugs and is very tactile touching everything! What I would say is it’s OTT. Weighted blankets can be good for kids seeking proprioceptive input.

Thank you so much Robinni. Your DS sounds a lot like mine in that respect. I think I really just needed someone to tell me that I wasn't overreacting.

I am autistic myself and tbh it's not really something I wanted for my own DCs, so yes, it is hard for me to accept.

I know it’s difficult. What has helped me is that I have greater empathy and can help DS.

Like you am autistic but didn’t go for diagnosis until DS went through his assessment.

We both will have memories of negative experiences, having difficulty etc.

Try and not project this onto DCs. It is a very different world now that 30-40yrs ago. People are more accepting and aware. And schools are legally required to help.

There are so many things available now that will help your DC. And more connectivity with other parents of autistic children for support for you.

There will be tough times yes but I don’t think they will have it as hard as we did.

Chin up, it will be alright and they will do well and have a good life whether autistic or not. Having a Mummy who quite obviously cares enormously will help x

Thank you. You are completely right and that is exactly the kind of pep talk I needed 💐.

I have submitted all the forms now for referral (although immediately after I submitted them I realised I'd skipped a whole section on one form 🙄). After the bank holiday weekend I will look into what help I can get put in place for him.

No worries at all. Getting the referral submitted is a big step!!

I’ll post my check list (with a few extras) here incase it’s helpful for you longer term.

1. submit autism referral
2. be aware of local and National autism charities and look at info on their websites - make contact with local one and ask if they have a support pack or anything that would help with your child’s specific needs. They can give advice on support in your area.
3. liase with school/nursery to discuss support
4. have autism assessment
5. apply DLA if diagnosed
6. check tax credits/UC entitlement if DLA granted
7. check family fund entitlement
8. investigate and apply for all manner of autism cards (think accessibility - free national trust membership for 2 carers, JAM card various autistic charity cards etc - you will get carer ticket for going to theatre or family days out etc)
9. understand SEN support in school, liase with school periodically to check support appropriate - consider educational psychologist, ECHP, SALT, OT (anything school can offer)
10. Attend Intervention offered via NHS autism service
11. Investigate local private support providers to supplement NHS if required ie. sensory integration therapy etc. and also things like summer schemes, event days for autistic kids.

I am up to about point 8 with this and that has been accomplished over the last year… so give yourself time. Your list may look a bit different to mine but it gives you a framework and might make things feel a little less overwhelming.

I hope all goes well 😊

Thank you so much, that's extremely helpful. Lots of things on that list I hadn't even thought of.

Your DS sounds very much like mine. Mine is 8 and particularly likes to harm himself though amongst so many other things but everthing you've stated is my child. I am going down the ADHD/ASD route on the advice of SEN teachers I know. I need to start getting tough though as it's been a 5 year battle so far

5 years?! In what way has it been a battle. I'm sorry to hear he is harming himself, that sounds horrible.

Various reasons but my DS is being failed from every angle. I am reaching my limit now. Im told things are being put in place but nothing has been done. Everyone keeps passing the book and fobbing me off. GP, CAMHS, school all diabolical. CAMHS have been a disgrace and only want to know if he has been hospitalised through self harm. It should never even get to that point!
I've always been asked why do you want to label your child....I dont. I want to get him support in place as he is living a miserable childhood and he is struggling with any sort of independence. I still have to toilet him, dress him, feed him etc. I've also been told over and over he will grow out of it despite me kicking off that it's actually getting worse. And now it is at its worst and I fear for our future to continue like this.
I broke down today as what I see my DS go through breaks my heart and overstretched services is a common response I am given. In the meantime my DS is telling me ways he wishes to harm himself, and how wishes he wasn't alive and is constantly hitting himself or causing injury to himself by impact. At what point do these services actually get involved. It's a horrible battle that continues. Unfortunately CAMHS have to be on board to get any further but they should be ashamed from what I've experienced.

@Needanewadventure2021

Have you got a diagnosis for your son?

Have you applied for DLA?

Needanewadventure2021 in some areas you can self refer to OT and SALT separate to the ASD/ADHD diagnosis route. If you can’t your GP can, you don’t need CAMHS involvement for that.

Does DS have an EHCP? If not, apply for one. Support in school is needs based, rather than based on a diagnosis, so you don’t need a diagnosis for DS to be supported at school. If he does ask for an early review or a reassessment of needs as it’s not meeting his needs. SALT, OT, MH therapies can be part of the EHCP and if specified and quantified in F it must be provided - the LA have to commission independent provision if the NHS can’t or won’t provide it.

Have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS. You don’t need a diagnosis for these.

Sadly, even when DC get a diagnosis many are diagnosed and promptly discharged.

Thank you @AReallyUsefulEngine that is all really good advice - taking notes for myself!! Although not having as much difficulty currently.

@FlamingoOrange add a final point to the list I gave (forgot sorry): investigation of carer’s assessment (for you), disabled facilities grant and carers allowance (or evidence of underlying entitlement if you earn too much).

@Needanewadventure2021 Follow the advice laid out by @AReallyUsefulEngine

What I was also going to share is that we were faffed around for about a year and half before we got referral for diagnosis through - largely with support from school. Then we were told it would be a further 3 yr wait on nhs so went private which reduced waiting time to 6 months. We used DLA to pay for this and are planning on continuing to use it to pay for some private therapies in future.

It definitely sounds like your child should be getting this - diagnosis or not - to help with support.

DLA applied for and currently awaiting a decision. If it's a no it will be another blow to things. I feel constantly on edge with needing to constantly support and supervise.

Re-referals made to CAMHS and OT earlier in the year but haven't heard a thing yet. CAMHS was marked as urgent due to son's behaviours escalating. GP doesn't want to know. Argues he is school age so these have to be accessed through school. CAMHS also tell me the same. School said not and haa to be accessed through others. School are only just on board following HeadT involvement. I think they are in trouble due to years of ongoing concerns which have been addressed in conversations and written emails and nothing has been done. This includes the SENCO. Basically fobbed off told not to worry but in his end of year report he is always performing 3 to 4 years below where he need be and everything I've voiced my concerns about somehow appear in his report, but staff have spent the school year saying they don't exist.

I get so upset as something definitely isn't right. And all these promises of him growing out of it have been a lie. Deep down I knew he never would but you have to put a level of trust in these professionals. Right now though he is being failed immensely and every avenue I try to access help I am told no.

I have considered private diagnosis but it appears I'm looking at around £2500 which sadly I don't have. Single adult household, full time but low income. Good point about using DLA to afford it though. However I've been told do access diagnosis via the NHS and not privately. Does anyone know why this is?

@Needanewadventure2021

Because the majority of support post diagnosis is NHS. That is what I was told.

So we put through the referral to NHS first and then went to a private provider.

Private provider did the assessment and then sent the report through to NHS to be ratified. Which it was - then NHS sent us our first appointment to discuss where to go from here.

£2500 is insane. We paid £850. Shop around. I put it part on credit card/overdraft. And to be blunt I had extra work lined up and things to eBay should DLA not come through, to prevent us getting into debt over it.

What I would do is contact your local autism charity and say you are considering private diagnosis for ASD. Get a list of providers and enquire with them re. cost, wait time and whether they can forward the report to NHS for ratification ie the particular assessment should be the same as what NHS would do (as long as you give them the correct details of where your child has been referred to for assessment this shouldn’t be an issue - they just pass on the report).

You can always go on a wait list now, while you are waiting for the DLA decision, (check if going on it obligates you to pay anything, it shouldn’t) and if you don’t get the award then have your child’s name removed from the list.

From what I’ve seen NHS and school have looked to me the entire time for direction and there hasn’t been a stage so far where somebody has walked towards us with open arms offering solutions. It appears the onus is on us.

I really hope you’re able to make some progress with things.

If DLA is refused ask for a mandatory reconsideration and then appeal if it’s still a no.

Apply for an EHCP, as I said SALT, OT and MH input can be included in them without the need to sit on the normal waiting lists and at a greater frequency than otherwise typically available.

Contact Caudwell Children. Depending on what funding they have available they can sometimes offer those on <45k free or vastly reduced private ASD assessments.

If you go private you need to make sure the assessment follows the NICE guidelines. If it doesn’t you risk others questioning the validity of any potential diagnosis. LAs cannot refuse to accept an assessment report purely because it is private, and you shouldn’t be refused ongoing NHS care (e.g. OT, SALT, CAMHS) because of a private diagnosis.

@Needanewadventure2021 If the school SENCO, teacher, Ed psych etc don’t come up with a proper EHCP then I would consider submitting a formal complaint detailing the time line of failures point by point and the impact this has had on your child.

I would also be investigating the quality of provision provided at other schools in the local area both online and by word of mouth with Mums whose kids have SEN (try local support groups for advice - you will find a wealth of knowledge), as there may be a more suitable placement out there.

Really great information. Thank you.

Where I am full diagnosis privately is just short of £2500. Was the £850 for a full diagnosis? Local to me specific areas only like dyslexia or dyspraxia are around £800 alone

How to apply for an EHCP independently

www.scope.org.uk/advice-and-support/applying-for-ehcp-without-educational-psychologist-report/#content-links

Robinni the SENCO, teacher and EP don’t issue an EHCP. The LA do that, although advice will be sought from, among others, the school and an EP.

If you go private you need to make sure the assessment follows the NICE guidelines.

This is what I was talking about - if you go private ensure that the assessment they are doing follows NICE guidelines and is acceptable.

I think you need to narrow down what the main issue that needs attention is.

For is our son was very clearly autistic and so we got him referred for this and had the ADOS-2 assessment done £850 (age 5)

When he was assessed they said there were strong indicators for ADHD. However this can only be assessed for between the ages of 7 - 11 on NHS and 7 - 18 privately. NHS referrals are not accepted until age 6. We are planning on doing the same thing if required - get the referral through and then go on the private waitlist when he turns 7, if no joy by this point.

He is possibly dyspraxic and dyslexic as well but well baby steps…

Getting a full MOT may not be the best thing. Mentally I don’t think we could have coped with that, never mind financially.

I would be guided by the Educational psychologists report as to what the priority is, if you/GP/school are unclear on this.
www.goodschoolsguide.co.uk/special-educational-needs/help-and-advice/educational-psychologist-assessment/amp

Thank you for keeping me right. This is all very new territory for me too.

But the teacher/Senco/Ed psych should be supportive of the process and issue some guidance surely? It sounds like they have washed their hands.

Another link for @Needanewadventure2021

www.gov.uk/children-with-special-educational-needs/extra-SEN-help

I wouldn't know which part to start with as there appear to be a few. A few SEN professionals I know have said I need to pursue an ADHD/ASD route. However Aspergers, Dyslexia, and Dyspraxia have all been mentioned too. He definitely has severe anxiety and massive sensory processing difficulties. His OCD is horrendous.
I've just looked privately for ADHD and ASD and it's around £2600.
Sorry for jumping in this thread but thank you for all your helpful advice

Asperger Syndrome is no longer diagnosed, it is all encompassed under the ASD umbrella now. The mental health and SPD are probably exacerbated by unmet needs in other areas.

Schools should make their best endeavours to meet pupils’ needs, but sadly, schools are often unsupportive of applying for an EHCP. Some schools are LAs often tell parents their DC doesn’t need or won’t get an EHCP but parents go on to successfully apply themselves. The advice from some schools and LAs about EHCP is questionable to say the least, so don’t rely on it - IPSEA and SOSSEN are a more reliable source.

The pp may not even have had EP involvement. Schools’ EP time is limited, and many DC don’t have EP involvement without an EHCNA application.

ADHD can be assessed before 7.