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2 year old diagnosis feeling alone?

Emjam12

My son is going to be 3 in September, we had concerns that things weren't 'right' from around 1yr old and as other children around my son developed speech and interaction my little boy has gone more and more into his own little world. his been assessed initially by a peadiatrician who has referred him for a STARRS assesment she said to me 'I'm going to mention autism to you as you will hear this a lot from now on' no firm diagnosis as of yet but upon reading more into the condition it now explains a lot of his behaviour, not answering to his name, very little eye contact, repetitive play etc etC. His behaviour is becoming more difficult to deal with everyday, we have his baby brother who's now 4months old and if he cries my son will scream and scream and get very distressed and he doesn't understand what we say so it's very hard to try and explain he gets in such a state over lots of simple things and I can see its distressing him, but I have been given no ways to cope, no techniques nothing. i feel we have been told 'he may have autism' and to get on with it ive called round to check on his referrals to be told it's 'a long wait' his initial assesment was in April.

I was just wondering if anyone could advise? As everyday that passes I feel we loose my son a little bit more :( and I feel so down like I can't help him as I don't know how I wish I could go into his little world and help him understand, but with no support even groups in our area there seems to be none! Please anyone with any advice would be greatly appreciated xx

  • HI. We have tried ear defenders with our son but not earphones (they sell kids ear defenders on amazon that aren't too expensive). He will sometimes wear them, and sometimes not. It is a worth a try, though possible you will buy them and he won't like them. I know some parents that have tried ear phones with music from an Ipod for their youngsters, but my son would just not be able to resist touching the buttons and pulling the wire out of the Ipod hence this is something we haven't tried. It is worth a shot perhaps? 

    I know what you mean about feeling like losing your son. I felt that way as my son was communicative and social until around 18 months and then the noticeable characteristics began to show and we saw less of the outgoing him, and more of the him in his own world. It is hard, but I have to say in all honesty that feeling will lessen as you start to feel less helpless (though to me the helplessness never goes away entirely). 

    I would suggest, if you can in any way afford it, to pay for a private speech therapy assessment. Our speech therapist was around £175 for the assessment (I guess prices will vary, but to give you an idea)... she gave us LOADS of helpful stuff to try with him, not only focusing on how to communicate to him and him to us, but also advice (basic, but helpful) on how to answer some of his sensory needs to give him the 'breathing space' to be able to try and communicate. We also paid for a private Sensory Therapy session, and she too have us advice (think she was around the same price)... this was simple things to try with him at home to help him regulate himself, such as investing in an exercise ball to help with his sensory needs. Obviously your son's needs will be different, but the point is, just one appointment if you can afford that much, will likely give you a feeling of some being able to help guide and reassure him. I appreciate for some it is too much money.

  • Thank you both for your replies, it's all very new to me too and as he gets older he displays different behaviours, even today when another screaming round began (a particularly bad one) my son began to rock his head back and forth it was scary to watch as he looked so unhappy but he also doesn't like to be spoken to he gets louder or if you touch him. he does have his room to go to where he spends a lot of time and I understand he feels safe in there but if baby screams even from his room he will scream  I havnt tried headphones so that could be a good idea to try thank you

  • Check the NAS website pages under About Autism - What is Autism, about page 3 or 4 on sensory issues.

    His baby brother crying may be causing unusually high stress. This is very individual, but it is not uncommon for crying babies to cause intense discomfort to someone on the spectrum.

    Part of the problem may be whether he can move away from the noise. Being a child and expected to be in one place is likely to prolong exposure to something that hurts.

    But adults on the spectrum can also react badly to noise occurrences that most people wouldn't give any thought to, especially when in a queue, or on a bus, where you cannot so readily walk away.

    Is 3 too young to have the option to wear head phones?

  • Hi

    I hope that someone has some advice for you. I know how stressful this screaming is, we've been having quite a bit of it with our 5 year old who is currently in the system to be assessed. The only thing I've learned is that it seems to make the situation worse if I try to reason with or comfort him when he is this upset. Saying anything, touching him or even looking at him can make him worse, so I don't do those things.

    I've been reading about Autism whilst we are waiting for the assessment and every site says that each child is different, so what works for one may not work for another.

    I'm sorry that I can't help more, I really hope that someone can tell you some techniques, and it may not help to say this but I'm sure that many people will understand, as I do, with how difficult this is for you and wish you strength and hope.