new and scared :(

[starlight29]

Hello
Im starlight my beautiful little man is 2 and a half he has hypermobility and low muscle tone he has now been refered to a specialist in asd as hes showing signs of that too.
Im just so nervous about it I dont know how asd is diagnosed my little boy doesnt communicate at all no speech pointing or getting your attention nothing at 19 months he could say 6 words this stopped a month before his second birthday. He doesnt play with toys of any kind he constantly arches his back I dont know why he does that. He doesnt look at people he looks at me sometimes but its brief he shows no interest in people and will staee srraight ahead if they speak to him. Hes not on solid food yet he has a real problem with textures he retches and will only really eat toast in tiny squares or porridge.
Hes been under speech therapy for over a year because he doesn't interact they have no idea how to help him so we are waiting for inclusion support who do a lot of sensory stuff to come asses him.
Hes spent a year under a paediatrician who has done nothing luckily the gp is brill and has referred him to this new specialist appt is in june.
He flaps alot but his whole body like lays on his tummy and flaps arms and legs I call him my chicken he is loving he snuggles mummy. He never paddys or crys its like nothing bothers him. He babbles constantly but to himself and he never smiles at people.

Thats the first time ive written all his funny ways out when I read it back its really scary.
Does anyone know how asd is diagnosed ? Is it a long process I feel like I dont understand how little chicken thinks so I cant help him I spend all day talking to him aand showing him things but nothing seems to help.

Thanks for reading

Starlight

 

[sun]

Hello - lots of hugs
My son also has hypermobility and low muscle tone, and they have been suspicious of him being on the spectrum since about 18 months. He hasn't been diagnosed at this point since he is improving in so many areas, but he does have global developmental delay (GDD) - including speech delay. But for us the speech has improved loads since he was 3 - he's 3.5 now. As far as diagnosing, for us it involved assessments from a developmental pediatrician, occupational therapist, physiotherapist, speech therapist, behavioural therapist, and dietician (our guy has sensory issues around food). They looked at all areas and from there formulated a diagnosis and treatment plan. For us, they gave us a general non-specific diagnosis (GDD) because they wanted to see about possible improvement in different areas since he was only somewhere around 2. The non-diagnosis is fine with me since he is still eligible and getting therapy he needs - once he starts school in Sept I will have to see how things go. We also got access to some fab parent classes on encouraging speech, behaviour, and diet which have really helped us!

That is my experience, but it could be different where you are. I am in Canada. You say he's been in speech for over a year at 2.5 - so was in speech at 18mo? Are in the US? Just a guess as not alot of places start speech that young. If you are in the UK, I don't know much about it as the system isn't the same - but from what I read on here most places see similar specialists/therapists (more or less depending on the child). The UK has different programs though, so someone might be better able to answer that.

 

[starlight29]

Hi
Thanks for the reply im in the uk because he was already under a paediatrician for his hypermobility at 18 months she referred him to speech therapy but they have been useless because he doesnt play with toys they have no idea how to work with him. Feels like he hasnt got the right help at all so im hoping the new dr will know what help to give him.
They sent him for a hearing test they couldnt do that because distraction doesnt work he just ignores them.
Hes under the physios already hes only just started walking took him ages they dont do anything just ask how he is and go again.
Your reply has given me hope though seems like if they see the right dr then the right help should follow.
Glad your little one is coming on
Thankyou

Starlight