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Terrified my 22mo has ASD

301 replies

Luke2019 · 25/11/2020 20:33

Hi everyone. Writing this from a pretty low and desperate place. My precious DS is 22mo and I am thinking he may have Autism. Up until a week ago, I had no concerns whatsoever. Didn't really pay attention to the little things and just thought he was speech delayed, like most of the boys in my family were. He has recently started spinning in circles whilst looking out the corner of his eyes which at first, I found absolutely hilarious and adorable. I ended up Googling it and lots of scary things came up about Autism. When I looked in to Autism further, I realised my DS has lots of the early signs and he even got a high risk score on the MCHAT test. He doesn't point to share attention or even point at all, he doesn't bring me toys or engage me in his play and his eye contact isn't great either. Sometimes he looks at me when I call his name, sometimes not. He doesn't put his arms out to be held (although he definitely did this as a younger baby). Every now and then he sort of will if I go to pick him up myself. He has no words but did pretend cough the other day after I coughed (I did it twice to make sure, and he copied again). He does babble and make sounds "da da da" etc. He also still puts things in his mouth a lot and licks things, which I know can be normal at this age. Other things I've noticed are he jumps up and down when excited, again, I know this can be normal and sometimes laughs to himself. I honestly am driving myself crazy from analysing his every move. I must admit, in the past I've sort of just let him do his own thing and maybe not got down and played with him enough. He does also love the TV. 😳 In the past few days I've tried to get him to help me put the laundry in the machine to assess his understanding. I put a top in and said "DS do it" and he did pick something off the floor and put it in, but I don't know if that is just copying/him wanting to do it anyway rather than following instruction. I did the same with getting him to put bath toys in the bath which he did copy/do. He is very affectionate, always has been and loves cuddling. He is also happy, smiley and easy going. I've started reading to him and pointing to pictures in very simple terms for example "cat, flower" then turning the page. I also move his finger to the image as if making him point to try and teach him to. The same with playing with him, I will say, "Apple please", put the toy apple in his hand and guide his hand to mine, then make a big fuss of him (even though he isn't actually doing it himself). Does anyone have any more tips for me? I've terrified myself from Googling so much and am now convinced I am going to end up with a severely disabled son, in a special school and maybe even non verbal and aggressive towards me and I won't be able to control it as a single mum. :( I suffer badly with anxiety as you can probably tell. I'm only 28, on my own with 2 kids (DD is 6 and NT), on benefits and I can't afford all the therapies they talk about online. I've phoned my HV and she said to keep an eye on it but wait until his 27mo check. Should I be doing more? My family think I'm going insane and that there is absolutely nothing wrong with him, that he is just delayed like all the boys in our family. My DB and both of my nephews did not speak until they were 3. And my sister said my nephew was also not pointing or responding to his name until 2.5. Please help me. I'm not eating or sleeping. I love my DS so much but am looking at him feeling like maybe I don't even know him which is tearing me up inside. Sorry this is so long.

OP posts:
Anon778833 · 02/12/2020 21:29

Oh her last post didn't indicate this. Anyway, I have a baby and I watch her like a hawk for autism. You just have to push for an assessment if you're worried. That's what I'd be doing.

dairyfairies · 02/12/2020 21:29

So people aren't allowed to say that they haven't found it to be 'life wrecking ' a previous posters words but you are allowed to say what you are.

that is not what I said at all. Why do you put things over and over again in my mouth which I have ever said?

You know exactly what you are doing. It's obvious that you came on to stir. Just go and find another thread to wind people up.

Wheresmykimchi · 02/12/2020 21:29

@SugarbabyMilly

Oh her last post didn't indicate this. Anyway, I have a baby and I watch her like a hawk for autism. You just have to push for an assessment if you're worried. That's what I'd be doing.
I didn't think so but a PP said it.
Wheresmykimchi · 02/12/2020 21:30

@dairyfairies

So people aren't allowed to say that they haven't found it to be 'life wrecking ' a previous posters words but you are allowed to say what you are.

that is not what I said at all. Why do you put things over and over again in my mouth which I have ever said?

You know exactly what you are doing. It's obvious that you came on to stir. Just go and find another thread to wind people up.

You know me so well , I regularly have so much time and space in my life to go and stir.

What am I doing , since you know me so well? I'm not entirely sure what I've been accused of. And you talk about putting words in mouths.

Alonelonelyloner · 03/12/2020 17:58

I haven't read the full thread but it looks like it's been derailed somewhat.

OP try not to panic. There is nothing 'wrong' with people with autism. They are normal people. They are people with autism. That's it. The vast majority of children and young adults with autism just need extra understanding and schools need to embrace their differences and help a bit. My autistic daughter is doing just fine at school.
I work in a scientific field and work with many, highly accomplished, amazing, friendly, cool autistic people. Please don't catastrophise something before you even know if a catastrophe is the case and certainly don't catastrophise autism.

Wheresmykimchi · 03/12/2020 18:53

@Alonelonelyloner

I haven't read the full thread but it looks like it's been derailed somewhat.

OP try not to panic. There is nothing 'wrong' with people with autism. They are normal people. They are people with autism. That's it. The vast majority of children and young adults with autism just need extra understanding and schools need to embrace their differences and help a bit. My autistic daughter is doing just fine at school.
I work in a scientific field and work with many, highly accomplished, amazing, friendly, cool autistic people. Please don't catastrophise something before you even know if a catastrophe is the case and certainly don't catastrophise autism.

I said this on page one and that was in the main what caused the kick off.
Duggeehugs82 · 03/12/2020 19:08

@Alonelonelyloner

I haven't read the full thread but it looks like it's been derailed somewhat.

OP try not to panic. There is nothing 'wrong' with people with autism. They are normal people. They are people with autism. That's it. The vast majority of children and young adults with autism just need extra understanding and schools need to embrace their differences and help a bit. My autistic daughter is doing just fine at school.
I work in a scientific field and work with many, highly accomplished, amazing, friendly, cool autistic people. Please don't catastrophise something before you even know if a catastrophe is the case and certainly don't catastrophise autism.

I read this as "dont catastrophise autism. " as in dont ever do it , not dont do it before u have had diagnosis. Would that be right?
x2boys · 03/12/2020 19:11

But there are also lots of autistic people,who have severe learning disabilities ,and are not highly accomplished and who will need life long care ,that's why parents like me get upset with these comments ,because it's not our reality ,right now the OP doesn't know if her child has autism or not and if her child does have autism she has no idea how it will affectt her child ,her child may well become highly accomplished or may not nobody knows right now .

x2boys · 03/12/2020 19:19

And my child isn't in the minority by the way ,if people were to visit any complex learning disabilities school there are many children who also have a diagnosis of autism and also many who probably should have a diagnosis of autism ,it's a spectrum .

Wheresmykimchi · 03/12/2020 19:44

Do we really have to do all this again.

x2boys · 03/12/2020 19:47

No of course not ,but posters need to realise that autism is a spectrum and for some people it's just a difference and for others it will mpacts massively and not make sweeping statements .

Wheresmykimchi · 03/12/2020 19:48

@x2boys

No of course not ,but posters need to realise that autism is a spectrum and for some people it's just a difference and for others it will mpacts massively and not make sweeping statements .
Didn't mean you.
x2boys · 03/12/2020 19:53

Ah right sorry about that and we are on another thread together and completely agree with your comments Smile

Anon778833 · 03/12/2020 20:09

On my autism group for women on Facebook there are people who have degrees and jobs but still quality for the enhanced rate of PIP.

There is a saying that autistic people use 'mild means that you experience my autism mildly but not that I do'.

Willbob · 03/12/2020 20:16

I don't think you can compare someone with a degree and a job to someone who requires personal care, 24 hour support and is non verbal. These situations are a million miles apart. The diagnosis needs to change so that it goes back to different diagnosis.

Willbob · 03/12/2020 20:19

Just to add people with severe autism won't object to that saying because they may not be able to. These types of statements can only be challenged by parents and carers because the people we care for can't. They aren't able to say that what they experience is more severe that doesn't mean that it isn't.

x2boys · 03/12/2020 20:22

Totally agree @Willbob but to be fair I would be happy if they took my child's autism diagnosis away as it doesn't really help him oe us ,his conplex needs and severe learning disabilities help more

Willbob · 03/12/2020 20:30

@x2boys yes we say complex needs rather than autism. The autism diagnosis is meaningless now. I don't think people realise the damage that is done to services and lives by labeling autism as a difference and not a disability. I would love a degree and job in my childs future, I'd settle for not biting himself, conversation with him and a full nights sleep. X

Anon778833 · 03/12/2020 21:23

I don't think you can compare someone with a degree and a job to someone who requires personal care, 24 hour support and is non verbal. These situations are a million miles apart. The diagnosis needs to change so that it goes back to different diagnosis.

I don't agree. Whilst the problems are different problems and of course the person with higher care needs is going to require more resources over time. That doesn't mean that the person with the degree feels that their life is easier.

I have AS, my 18 year old dd has very high care needs and my 11 year old dd has AS.

My 18 year old and I have more in common than people might think. In that our autism affects our mental health and is the main thing that has a knock on effect on our lives.

My 11 year old has quite a different profile.

Autism is such a complex thing that I can understand why functioning labels aren't considered helpful any more.

x2boys · 03/12/2020 21:25

Absolutely the diagnosis needs to change you cannot compare a child or adult with autism and learning disabilities with a child or adult with autism ,it's really unfair for everyone

Anon778833 · 03/12/2020 21:27

@x2boys it's not that simple. People with autism have really spiky profiles.

x2boys · 03/12/2020 21:30

Well fine maybe people need to just look at functioning levels than just giving a diagnosis helps no one

Skipsurvey · 03/12/2020 21:32

I think it is now ASC, ie a condition

if that helps at all

Anon778833 · 03/12/2020 21:33

Isn't that what an assessment is for? Assessments now take the form of providing two lists of strengths and needs which is really helpful without categories of functioning labels.

Willbob · 03/12/2020 21:43

@sugarbabyMilly but as you say what you have in common is your mental health needs not your autism needs. The two are separate things and while one can impact the other they are not the same. To say so is to say that the problems that come with severe autism can be put down to mental health.

Given a choice as a parent I can't imagine anyone if given the choice of a child who can get a degree and hold a job or a child who will always need 24 hour care and never be able to get close to those things, the majority of parents would choose the degree and job.

Functioning labels can be extremely helpful to those that have more profound difficulties as it communicates that. They are not helpful to the higher functioning autism community who sometimes (not saying you but some others) see the severe side as a dirty mark on the autism name.

There really does need to be a way to distinguish between the ends of the spectrum.

In regards to spikey profiles what about those who are always in a trough in every area every day with no peaks?