To think DS doesn’t haveautism

[TakingItall]

So the word autism has never been said by professionals. He is going through a asd assessment but I know this doesn’t mean he has it. He was non verbal until 4 and a half now he is saying some words like “bed” “milk” etc. He doesn’t like routine but that might just be him as I am the same. He understands things like get your shoes or coat. He doesn’t like being wet he will freak out but I don’t know anyone who would like to get wet when they are dressed. School said he will gag if children in the school hall are having pasta or something but maybe he just doesn’t like pasta. He won’t socialise with other children but I like to be left alone too. School says he has no sense of danger but surely this is normal for 4 year olds.

They are trying to aim asd at him and I don’t think it’s fair as he’s only 4 and they need to give him time to develop

Because it take so bloody long and by the time you wait until things are clearer and you know your child is severely struggling you're already at the point of needing the help. They don't just diagnose children for fun at 4 they do so because they know that the need for support will continue to grow and with the diagnosis they will be better able to access that support when it's needed. Being diagnosed later just means children are left unsupported longer.

You know by saying you have all these traits likely indicates you are on the autistic spectrum too. It often runs in families but older members are now just 'officially' getting diagnosed.

My family has always been known to be a bit unusual, my mam probably the least so. My mam was late 40 before being diagnosed (and she was exceptionally high functioning and very smart/hard working just struggled with the nuances of navigating social situations).

My nana never had a diagnosis but clearly had learning disabilities and was very vulnerable, like a child almost. My uncles clearly are autistic but untested however now 3/4th of the younger generation have been refered by school and are diagnosed autistic. There is only 3 of us known not to be autistic having gone through the testing and not tested autistic.

Of those that are autistic in my family it run from classic 'autism' to classic 'aspergers' so although all autistic there are different ends of the spectrum from barely functional to hyper functional, from learning disabilities to incredibly smart, from milestone delays to being 'advanced' children.

There no one size fits all but what you are describing are some of the symptoms that professionals look out for. Not testing won't change the outcome it will just mean no diagnosis.

Mine likes nursery rhymes and the actions to them. Might be an idea for you? Mine often says "oww" to the fish biting his finger. 😂

@TakingItall I would start a new thread in Special Needs section, saying it is possible your DS has autism. You will get more advice from parents who have been in your position, and less criticism that you can get in AIBU.

Request a meeting with the SENCO at school.

It also sounds like you need to request an early review of the EHCP. On their website, IPSEA has a model letter you can use. If DS is only receiving SALT once every 6 weeks and there isn’t other professionals involved, the EHCP is poor. It needs improving. This is completely separate to the diagnostic assessment. Reading IPSEA and SOSSEN’s websites will help you to understand the EHCP process.

I think diagnosis is important and suspect your DS will be diagnosed, but if DS is on the waiting list to be assessed, he will be assessed in time, so I’m not sure why you are so hung up on thinking he isn’t autistic and people should just wait. You are going to wait.

This was similar to my son at that age but he was diagnosed at 3 1/2. He was in special education until 16, did a year at college (Skills for Life) then entered mainstream college and worked his way through a foundation to BTEC, did his BTEC and ended up going up university a few years after his NT peer group and getting a 1st.
I guess all I’m saying is don’t fear any intervention or a diagnosis as it’s quite clear he needs some intervention and earlier is always better. Even if it’s ‘just’ global delay that can be caught up to some degree it still takes years and socially ( in regards to autism) it’s arguable whether someone ever catches up (or masks till they no longer can).

if it turns out not to be autism and he is just a bit quirky and a bit delayed the interventions certainly won’t cause any harm. I would say though, that considering how hard it is to get diagnosis and intervention for anything ND related now, the fact the school are pushing on this suggests there really is an ongoing longterm issue that needs intervention.

Thanks for this recommendation I'm going to get it!

The apple doesn’t fall far from the tree. Autism goes unnoticed by so many autistic families because it’s our normal. The assessments will take into account count any developmental delay. I’d recommend getting yourself assessed too. All 3 of my dc and me are autistic and/or adhd. It’s not a label or a dirty word or anything to be ashamed of. Your son needs a lot of help and getting him assessed is the best thing you can do for him. I went undiagnosed until I was 48. A lifetime of being different and not knowing why. The eye contact thing is a myth btw. Our eye contact is different, not missing. I hope you both get the help you need.

If he’s not autistic then he won’t be diagnosed as one. You say you want to “give him a chance”, but a chance for what? More time to see if he catches up? But likely he isn’t going to catch up without a massive amount of support and he will likely only get that if he is diagnosed. And if for some reason he is misdiagnosed then he will catch up at some point and not need the support anymore.

There is a possibility it could be global development delay, so he could be diagnosed with that instead. But kindly, you need to really fight for him to get the help and support he needs now. Starting at home.

@TakingItall My DS is autistic, diagnosed 4 years old. Very happy and social kid (but social without reciprocity) who didn't have a problem with eye contact but language very delayed (which could have been normal since he had two languages at home and never went to nursery).
I took him to the speech therapist once a week from that he was 4 until he was 13 when he refused to continue. He's 15. His dad was always in denial but has finally come to terms with the fact that his son can't be in mainstream (he was until end of primary with 1:1 support). He will now have to go learn a practical job with young people with cognitive impairments even though he doesn't really have one because of his disability which is making everything hard for him.

Please be open and ask for a meeting with school. They are not your enemy- they probavly need for your son to have some 1:1 support and he won't get that without a diagnosis. You can also ask for DLA- a benefit you can receive to help you with additional costs for ex. private speech therapy/other. Actually you can use it for whatever you want- some just see it as extra fun cash- but good parents use it to support their children.

yes, this. I didn’t have anything to compare my son with as no younger relatives and no concept of how it ‘should’ be. It’s only now I am older and have seen how NT parenting compares and how much easier it is in many ways (but so much harder in many other ways from an ND parent pov)

Neither I, nor any of the other posters on here (despite what claims might be made) have any idea if your son has autism, because we don't know him.

It sounds like he's got some delays, which could be a separate thing. Think at this point even though it's hard you have to see what the professionals say, and take their advice.

Best of luck to you and him.

What do you mean by delayed? Delayed by what? Why do you think he is not speaking by 4?

Typical development is well identified, documented and explained and if a child is not following typical development then there must be a reason for that.

I am really unsure about what you think delays children. My son is diagnosed with ASD for example and even though he spoke a lot by 4 and speaks a lot now his brain neurology is different so he has atypical behaviours and responses that are typical to a person with ASD.

I would hazard a guess that any child who lacks verbal skills by age 4 has some form of difference of neurology or alternatively a damaging environment that needs to be picked up to be worked on at that stage.

No child is delayed without different neurology so if it isn’t ASD there is something there if you see what I mean.

OP, please don't be worried about your DS being put in an assessment process. He is obviously struggling at school, and an assessment will help the school (and you) identify ways to help him.

He may be autistic, or he may not. If he is, the diagnosis doesn't change him at all but it will help him get support. If he isn't autistic, the assessment process should still help to identify things to support him.

My DD was diagnosed at 15. Like a lot of girls, she was very good at masking and didn't start having problems till she was about 10 or 11. It took us all a bit of time to get our heads round things, but having autism flagged up as a possibility (and then a diagnosis a few years later) helped us deal with things better. She is still our lovely daughter, whatever diagnosis she has. We don't broadcast that she is autistic to all and sundry so she isn't 'labelled'.

You need to be your DS's advocate so please don't bury your head in the sand. Do some research, speak to your SEN contact at school and ask about anything in his Plan which you don't understand, then make sure that everything in the Plan happens! For example, is a SALT session every six weeks enough? Do you think his speech is improving? Does school think he is improving? Ask questions and make sure he is getting the help he needs even before the autism assessment happens.

Take all the help for your son that is offered, and ask for more if necessary.

You can do this!

they do so because they know that the need for support will continue to grow

the thing is they don't know this at all though. Many children who have high needs at 4, will not continue to have clinically significant needs longer term.

I hear you on the waiting lists - that's what has motivated me to get on the assessment pathway even though I don't really agree with labelling my very young child (especially given stigma).
It's just such a shame there isn't a better system in place where children are given the support that they need for the present challenges - e.g. SALT for speech delay, OCT, etc. - without needing to slap a permanent diagnosis at a stage of development where this diagnosis can tell you so little about future development/ ongoing need...

Don’t fear the assessment and the potential diagnosis, OP. They are looking at what is different with your child and if they find him to be delayed, they will tell you as much. If they find there is another better name for how his brain behaves, they will tell you that. No matter what they tell you, it gives you and his school an understanding of what support is best for him and that is the win you need!

Do you know the expression ‘it takes a village to raise a child’? Right now you need your village because a child with a language delay needs to be exposed to appropriate rich language opportunities. That means human speech, not recorded speech, as much as possible. Once every six weeks is only enough to observe any steps backward - it’s not enough to make forward progress. If he can’t speak back to you, that doesn’t mean you speak with him less. If anything, you narrate to him as much as possible. He needs to hear and see people talking and there needs to be pauses that would allow him to respond as a more fluent child would, even though this will
just be silence right now. So time to get your village in line: make an appointment to speak with the class teacher and one with the senco. The SALT would be great too if possible. Get your head into the mindset of ‘how can I help my child improve his speech?’ so you’re out of the mindset of ‘what if my child has autism?’ Because one of those is far more practical and helpful than the other.

Once you have met with them to have their support of what can be done at home, then look at this side of your village. Who spends the most time with your child? If there are times when he has to sit without human interaction, who else can you speak so you can get more hands on deck? How often does anyone read picture books with him? How often does anyone narrate his activity to him, like now we are getting dressed. This is your shirt, these are the buttons. Let’s find your socks. You have two feet so you need two socks. One, two. Two socks! And so forth.

If it is just a speech delay and things have been physically checked that everything in his mouth works etc (remember older children can still have a tongue tie, not just babies!) then a real effort to surround him with enriched language opportunities for a good six months should give you and his teachers a sign of what progress can be made. It is worth the effort!

Above all, don’t use your energy for worry right now. Use it for practical ways to help your son develop key skills.

Child can be delayed overall may never catch up fully that is ok eg down syndrome or similar
May be very fine in a mld sen setting or supported in mainstream primary .

child may have speech disorder like apraxia very important to diagnose and specialist therapy Needs specialist slt setting

Child may have asd again very different approach and specialist support may be needed to understand and manage . May be best in asd unit

So the correct label is super important for your child to receive the right support now

No point waiting for a child with asd to follow a developmental pathway they never going to follow

A delay is vety different and is catch all and may be correct or not . Asd label opens other doors

There are differing levels of autism and you don’t have to have all the things to be autistic. The fact he can’t talk at his age is concerning and all of the other things sound linked.

thank you

@TakingItallif you have any questions or need some help getting to grips with everything that’s going on, I recommend posting separately on the SEN parents board. I’m amazed your ds has had an EHCP put in place so soon after starting school, they’re notorious for taking ages and parents having to fight for one, being rejected and appealing etc. Why not ask your sil if she can attend a meeting with you and arrange to see the school SENCO and ds’s teacher, it sounds like communication isn’t great.

Autism is massively over-diagnosed these days, but it really does sound like he has it, and has quite significant symptoms.

I have a DS with ASD and he is extremely affectionate and caring and can manage eye contact. People often have very stereotyped views of ASD (I used to have) but it can present in many varied ways.

Hi OP, my 5 yr old DD has autism, she was pre verbal until just before her fourth birthday, alot of examples you have given are indications of ASD and not so much Global developmental delay.
No two kids with autism are the same, my girl is social , a real chatterbox and very sporty, she also has sensory issues around clothes, food , noise etc , her eye contact is great with some people not do great with others. Please allow your child to get the help he needs.

The inability to speak doesn't always hinder the ability to understand.

If your sons social deficits meet the triad of impairments then yes he is autistic.

It is a neurodevelopmental disorder that can cause delays. Many autistic children are gestalt language processors, not acquired language processors so the support for speech and language can change drastically from an autism diagnosis.

Don’t worry, he won’t receive an autism diagnosis unless it’s clinically warranted. Despite what the media sometimes suggests, ASD diagnoses aren’t handed out lightly. The process is thorough and involves multiple professionals, using detailed developmental history, structured observations, and standardised tools. These assessments are interpreted within context by experienced clinicians, so a diagnosis is only made when there is clear, consistent evidence across settings. I'd suggest you might want to look into you also being assessed.