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.

Aspergers is now under the ASD umbrella. Previously our son would have been diagnosed as ASD.

I would continue on with the ASD/ADHD route as this appears to be the major concern and he is of an age where ADHD assessment would be appropriate. For us the cost of that in total would be £1700 but as I say it’s split in two years a part due to age.

To put it into context we got DLA backdated to the point where we ordered the form and the first payment covered the cost of autism assessment. And I wouldn’t have blinked at spending another few months entitlement on the ADHD too as waiting around so stressful. But I can appreciate there may be other things your DC needs more urgently, and that you are probably by now (surely) towards the top of the NHS list so perhaps better to just go with this.

Good luck

One thing to check before a private ADHD assessment is whether your GP is willing to prescribe medication without the child being seen by an NHS psychiatrist. Some are, some aren’t and if they aren’t you may be left paying for private prescriptions until the child is seen by CAMHS.

Re. Adhd access, sorry where I am it can’t, they refused GP referral and are prioritising 7-11 due to the covid backlog unfortunately… so have to wait until he is 6.

Private providers are currently closed to new referrals where we are now too as demand so high. Nauseating. But again they won’t accept until 7.

** sorry typo in previous post

Previously our son would have been diagnosed as aspergers.

That is a local policy and for private assessments up to the individual HCPs, there isn’t anything stopping DC being diagnosed before 7. There are posters on MN whose DC were diagnosed before that age.

Re. Wait times I've been told to expect 89 weeks. The more I am told the more fearful I become of the impact this all has on him

No problem at all for you to get advice on this thread @Needanewadventure2021 . It sounds like you and your DS are having a really tough time atm.

Needanewadventure2021 while a diagnosis is helpful to understand the whys and a sense of identity, support (e.g. at school, social care, OT, SALT, DLA) is based on needs, rather than a diagnosis so being on the waiting list won’t prevent DS receiving support.

@FlamingoOrange can appreciate your hair may be standing on end if you’re still reading this. Imagining what is in store.

Please remember your child is an individual and people on the spectrum, as I’m sure you know, have a whole host of presentations, strengths and weaknesses. We know a lot of autistic kids and their journeys are very varied.

What I will say is get yourself a few folders. I have one for autism, and another for school related information. I have an index at the front for both.

In the autism one I have various information booklets I’ve been directed to or have found myself, reports from school, reports I’ve written myself, the assessment report, letters received and sent, scanned copy of DLA form submitted etc etc .

For the school one I have SEN guidance on pathways and what help is available (which I am still trying to get my head around), alongside correspondence with school, extra work assigned, and general school letters, guidance on the syllabus etc that they gave us, because I do some extra work with him to help him.

Being autistic you probably thrive on organisation and breaking things down so they are more manageable. That’s what works for me anyhow. I have my list and work through one thing at a time through the week and month. And try to remember it is a marathon not a sprint being a parent in general!!

DS had some very good advice for me
”you know mummy, you’ve been a bit shouty today, maybe you should sit down, relax and do something enjoyable” 😉

@Needanewadventure2021 organising all the information you have as well could be good to keep track of things. Genuinely what you and your DC have been through is appalling. So sorry that you have been let down and I hope you are able to pursue the EHCP and Ed Psych assessments independently, as well as SALT/OT as suggested by @AReallyUsefulEngine to try and get support built up while you wait for ADHD/ASD assessment.

I am still reading all this, even if it's not directed at me, it's still all really useful information and I'm learning a lot.

I agree. Everyone has a different experience. Also one size doesn't fit all. I've found before, as my DS hasn't rigidly fitted 'criteria' it has been easy to say he doesn't fit a condition. But along the way you come to learn that many many many people don't strictly fit all the criteria anyway.

My DS has the most horrendous meltdowns when overwhelmed. Getting him to leave the house is particularly hard. He rages that he hates people and needs people to get away from him even me. He wishes he never had any friends or to be around people ever again. The sensations he gets with his sensory triggers some horrible, extreme examples of what he wants to do to himself to make it stop. They are very hard to hear. He has like a facial tic that honestly makes him look possessed. He often cries that he is being controlled by his brain. He wont sleep alone and has to be right up next to me. I write these examples with tears in my eyes. I feel helpless. There are many many hard times we have every day. But my DS it also the most loving well mannered little boy otherwise. Because he is caring and loving he can't possibly have anything wrong. That really bugs me. Everytime he sees me he beams with joy and gets excited. Even when he takes things out on me, once he has calmed down he cant stop apologising for being so horrible to me, it makes he feel terrible. Once he lets someone in you have a friend for life type of thing. He its very black and white. I love that about him. Nothing is wishy washy with him. He sees this one way and that's it.

I know I have this really special little boy, but his struggles can often hide the good.

I also hate to admit this but my DS looks like a 'normal' child . Again it feels horrendous using this phrase but I mean sometimes children can have physical characteristics of conditions/additional needs. My DS doesn't. He is also a master at masking. He can be quite jekyll and Hyde. If he has had a bad day at school it won't show at school. He will maybe fidget, chew, hand wash, zone out but he has learnt to hide these at school and has found new ways to do it that go unnoticed. But when he gets home it can be very volatile, mostly explosive. I walked in from work tonight and I knew straight away to give him space. A friend had annoyed him and he couldn't get over it. He will hold a grudge now and he won't ever forget. He eventually works himself out of things and we are able to talk but he mood remains affected for a while. It can be like treading on egg shells.

I honestly wish people could be a fly on the wall. Only when he fully becomes comfortable around people will he show his true self. Maybe that's another part of the battle.

As parents we just have to continue fighting. But it makes me sad to see how much of it is around and how long children have to suffer for