Can’t cope with my son

[edinburghlass1991]

Ds is aged 2 and a half. He has no word whatsoever his understanding is limited. This morning he has broken the tv and bit me dd6 and himself. He throws his food empty’s water screams for little things ( we went out the back door and not the main door today he screamed ) when I told him of about the tv he couldn’t tell I was mad like when my dd cry’s when he bites her his reaction is the same as if you were playing. I don’t know what to do dh is coming home tomorrow early his mother has had ill Heath but feeling better now. I just can’t cope anymore

I don’t believe he has asd which is why we said no to the asd team getting involved

Your beliefs don't matter, what matters is your son.

Professionals do not offer to test for autism unless there are indicators. There are a host of parents on the SN boards who would have given their eye teeth to have been offered an early diagnosis for their kids, me for one, instead of being fobbed off for years and watching as their children were treated dreadfully and misunderstood throughout primary school because the assumption was naughty child will not do x whereas the reality was child is not able to do x without interventions and support.

IF he has ASD, he was born with it, he has it now and he will always have it. Irrespective of whether he has a diagnosis or not. A diagnosis cannot give him ASD and neither can ignoring it remove it.

Children who have ASD and are parented and schooled like NT kids have a terrible time because they are misunderstood, called naughty and unco-operative (and worse) when none of it is their fault. They receive no help or leeway in schools and their self-esteem is rock-bottom and their MH suffers.
It was to stop that happening that the early intervention programme was introduced because it's proven that the earlier ASD is picked up and interventions are put into place, the better the outcome for the child.

If you have it investigated, then you'll know one way or the other.

But how do you know he doesn't have it? What level of knowledge of ASD do you have?

It's not a label, it's a valid medical diagnosis.

Hello. Try www.afasic.org.uk
They are a communication and speech charity. They have a helpline. I found them quite helpful with my son.
Also have you tried teaching you own version of sign language?
I did this with my son. It was really helpful. There are books in the library for baby sign language but we made our own signs up. I would say the word like ‘all gone’ of ‘drink’ and make the sign at the same time. My son started to use the signs too and it reduced his frustration levels.

I'm a Senco and I would strongly advise you to go through with the ASD assessment. He may be able to get an EHCP, and this will be vital if he is to succeed in school.
The things you say he can do, can all be done by people with ASD. The whole point is that it's a spectrum and no two children's with a diagnosis will behave in the same way.

Try to have an open mind, you're already looking for answers and support for his behaviours. You quite understandably don't want the answer to be that he has ASD. I see this very often. It's not a death sentence though, it's just a name given to some children who struggle to communicate. You need some impartial advice and signposting to the right support.
I wish you well x

@edinburghlass1991 and this is why children are often not diagnosed (if there is a diagnosis to be made) until they're a little older than your son.
ASD is very complicated and looks different in every child, and requires finesse and time, and a multi disciplinary approach to diagnose. There are "classic" autism traits that a lot of people think of - such as lack of eye contact - but there is so much more to the diagnosis.
Nobody will diagnose your son on a whim. And you will hopefully have some answers.

You poor thing Op , it sounds exhausting. It really is worth working with the asd team , if only to rule it out , then you can move on to do other tests . Medical diagnosis are sometimes a process of elimination. X

Things he does which means he doesn’t have asd
He can give eye contact
He will point at things for help
He shows me things ( by throwing it at me)
He does understand some things like no and ds put that back etc

DS1 has ASD. He’s towards the high functioning end.
He can give eye contact (but does sometimes struggle with this).
He pointed at things for help before he learnt to talk (he had no language delay).
He shows me things that he finds interesting.
He was able to understand and follow simple instructions by 2yr old.

I can understand not wanting your child to have ASD - the world is set up for neurotypical people and is a much easier place to live in for neurotypical children - but none of your examples rule out your child having ASD.

We are due to see pead again in December which we have said we might revisit asd team. He has just started a special nursery which are great dealing with kids with communication problems and we are very keen to hear there view as he gos Monday to Friday for a few hrs each day so they will spend a lot of time with him. We will always do what’s best for him or what we think anyway

I know how lucky we have been with professionals. We take him to the yard sometimes and often talk with other parents the struggle to get someone to listen. It’s unbelievable how often someone needs to wait. We have no problems if he does in fact have asd but just want to get

It right

The right nursery environment can be hugely helpful for toddlers with delayed speech. They are often set up in a way people struggle to do in their home environment. Additionally, the nursery will be able to contribute information towards any diagnosis (if there is one) going forward. And to an EHCP etc.
It sounds like a sensible decision to revisit the idea of the ASD team in a few months.
Best of luck x

My nephew has ASD and can look me in the eyes and likes a cuddle. Not all kids with ASD are the same. Having him checked for ASD does not mean that he has it, if he doesn't they will tell you that he doesn't have it.

Hi Edinburgh
I work on an autism diagnostic team. Many parents (myself included) feel ambivalent about having their child assessed for autism, but as stated above not everyone we see does turn out to be autistic.

I think it might help if I explain a bit about some of the things we look for in younger children. The shorthand is "autistic toddlers don't point or give eye contact" but that isn't really correct. Many autistic children point, the key thing is the reason they point. It's much more common autistic children point to request something than to point something out. So a toddler pointing at their cup when it's out if reach on the side would be less reassuring than a toddler pointing at (say) a bird flying by. The latter is a shared piece of communication to share an experience - in effect the toddler is saying "wow mum did you see that big bird!" - whereas the other toddler is saying "I'm thirsty" - about their own needs. The communicative intent is different.

Eye contact is variable too and in some autists can be very intense or held "too long" or again, used only to request rather than to share an experience.

Showing things is another "shared experience" thing....but throwing the item at you isn't a typical way to show items, and does he show interest or pleasure in your response to being shown? That is often what motivates NT kids, they want the shared pleasure in the item, the joy of you saying "wow it's a lovely shiny stone!" Or whatever.

Autistic people can and do learn all these skills by the way, I'm talking about very very young autistic people. The key thing often is that when playing, NT kids are more motivated by shared experience whereas autistic kids are motivated more by exploration of the properties of the object itself and much less interested in sharing that (at this age).

When my son was the same age i didnt want him to have a diagnosis of ASD either i kept thinking it must be something else he must be deaf etc he has perfect hearing , he was diagnoaed ay three witj autism and learning disabilities but he is who he is and i cant change that as much as i might want to

You definitely sound like you're taking the right approach. For perspective, my DS is 6 and has just been diagnosed with high functioning autism and ADHD - his eye contact is excellent with us but experienced professionals notice that it's lacking when he interacts with them. He pointed at things when younger, asked for things, can have conversations, lots of things that crop up on the symptom lists you find online. But he also struggles massively with changes in routine (has a terrible time settling in to school with the start of each year), can't cope with other children deciding what to play and always wants to be in charge, has massive problems calming down if he does lose his temper at school (again not something we are at home because we can give him time alone more easily). Getting a diagnosis has meant for us that we go from having to argue every step of the way and to beg the school to try and put things in place to help, to being able to apply real pressure to get them to adapt to his needs. We've been offered help from charities and local support agencies to help us recognise and deal with different behaviours in a way that helps DS as well. It's not what I'd ever hope for for any child, but don't. Be afraid of getting an ASD diagnosis - the behaviours you're dealing with will be exactly the same but you can access far better support to understand and deal with them when it's a diagnosed condition and not just 'behavioural issues'

He won't get diagnosed with asd if he doesn't have asd.

Not getting diagnosed won't stop him being autistic if he is.

But the diagnosis pathway will pick up his strengths and weaknesses and give you a full picture of what you're dealing with.

And those things you lost that make you think he isn't autistic? They are not on the diagnostic criteria so don't actually indicate it either way.

The services for asd in this country are diabolical. They DO NOT refer children they don't already suspect have an asd Willy nilly.

It sounds like you should be getting the ASD team involved

OP apologies for derailing your thread slightly. I hope you don’t mind me asking @mumonashoestring can I ask how you went about getting a diagnosis for your DS - he sounds very like my DS ( also 6) who I am struggling with and struggling to access help for( his inability to calm down is more evident at home though)?

Sorry again OP and I hope things brighten up a bit for you - some days it can just be so hard

The other thing to remember is that ASD is a spectrum of 'impairments' so each person with ASD will have a set of things they can do or can't do that will differ from another person with ASD. Not every person with autism has all the 'symptoms'.

@Ilovecrumpets it has been a while getting it sorted - in our case the problems present more at school and the school were concerned enough to want extra funding for more resources but not concerned enough to actually do any paperwork We started with a GP appointment where we outlined our concerns. I've found it helps to go armed with some factsheets on autism, ADHD, anxiety and any other related conditions you feel might be relevant and highlight where you see that your child's behaviours apply. I scribbled on notes as well - so where odd obsessions were mentioned I would explain that DS was obsessed with drains at the age of 2, lamppost numbers at age 3 or whatever you've noticed that stands out to you as being of concern. The GP listened and arranged a referral to the community paediatrics team. If he hadn't I would have sought a 2nd opinion. Another route for you might be to ask the school SENCO for help with a referral if your GP is unhelpful.

At the same time we asked the school if they had access to an educational psychologist or any other professional who could come and assess DS's behaviour in school. We had an initial meeting with the paediatrician from ComPaeds and after seeing our notes, the Ed Psych's report and talking to the school, she arranged a multi disciplinary assessment. This was a week during which we were at the hospital every day for appointments with the paediatrician, an occupational therapist, speech and language and audiology, a dentist, a psychologist, and finally a wrap up meeting with the paediatrician.

During the week we and the school were asked to complete paperwork as well which they used to 'score' DS in terms of things like his willingness to comply with requests, ability to hold conversations, empathy, all sorts of different things that on their own you might hardly notice, but all together can indicate different issues. At the last appointment with the paediatrician she gave us her conclusions verbally, the written report usually takes a few weeks to be prepared. We were also given a big stack of leaflets on local support services and other resources that might be useful to us but I imagine this varies hugely from area to area.

Next step for us is getting an EHCP in place so that we can hopefully make adjustments clear and required rather than the school being able to faff about half trying something and then not bothering any more without telling us anything has changed or push for a referral to one of the local SEN schools. Happy to PM if you want more info or just someone to chat to for support but I thought I'd put this here in case it's useful for anyone else.

Thank you so much mum that is really helpful. As mentioned part of my problem is he is more extreme at home and also my husband left at the start of the year so now everything is placed on that but he had all these behaviours before! The tips for going armed to the GP is a good one.

Sorry again OP - I hope I haven’t derailed your thread too much.