do I really want a diagnosis? What will it change?

[chubbymomie2012]

Apologies in advance if this post becomes haphazard, it just illustrates my feelings about this issue.

My DS3 is 2 1/2. since he was approx 2 we noticed his speech was non existant and his communication with us and his 3 siblings has been very limited.. We used to say he was like a wee cat.......he loves attention and affection but only on his terms.

Since then DP and I have had him referred to a paediatrician who has said she feels he warrents further assessment for ASD and will send for us when he is 3 to do the "Griffeth Developmental Assessment" so in the mean time we are waiting on NHS speechtherapy (long waiting list in our area) we are paying for private SALT and he is having a Occupational Therapy assessment as per the SALT assessment.

There are many days when apart from the speech issues my little man seems totally fine, then there are days when he is very "stressed" he spends a lot of time with his hands over his ears, or running from one side of the room to the other, or he will just not engage with me.

i feel like his behaviour is becoming more polarized. Im frustrated because we dont know if he has ASD or not. but at the same time im terrified he will be "labeled" by our friends and family and treated differently if he is diagnosed.

i love him so much and i really wnt to protect him from all the horrible people in the world who dont understand ASD.

but what if he isnt ASD? what is causing all his quirky behaviours?

my last worry (promise) is how do we get an educational psychologist to assess him with regard to nursery...as he is he could not cope with a mainstream nursery.......his grasp of language is just to low.....

all advice accepted.
thanks in advance.

I couldn't read and run without posting. My DS is on the road to being assessed and its possible he could have autism and/or sensory issues. He's 5. So I haven't got a wealth of experience to share with you, other than I once read someone's reply to a similar thread which was - autism isn't a label, its who they are'. I hope I keep that in mind if and when DS gets a diagnosis. With a diagnosis comes understanding, help and support, for your child and for you, from a range of networks (education, friends, family etc) so I would have one if I were you. I share the fear of telling people what your child has (or is ) but in my case I'd rather people knew that his funny quirks were as a result of XYZ rather than poor behaviour which does happen. Those who love and care for you both will accept, support and love. Those that don't and have an issue are not worth it.

As all the wise people on here told me when I raised the same questions a few years ago 'a label is only as good as the help it brings', ideally a child should help based on their needs, but it seems a label helps. Without one I found my parenting was blamed/questioned. I also found that ds was labelled as 'naughty'.

With a label, I have found professionals take you more seriously. I also found people without an understanding of ASD, found it easier to understand with a label, including me. I was able to read about ASD, sensory issues and behaviours etc and help ds.

Not having a diagnosis won't change anything about who he is.

With or without it, those who would be nasty based on his behaviour will still be.

Those who would perhaps be shamed into tolerance by a diagnosis will see fit to sneer and judge, without one.

Those who would accept someone who behaves as asd but does not have a diagnosis but would switch their behaviour to horrible upon hearing a 'label' are batshit crazy and therefore not to be given any consideration at all.

And diagnosis brings with it support which is otherwise not available and which actually helps the child to learn vital skills that otherwise they may struggle to learn, therefore helping them more than not getting the interventions because of fear over labelling.

Hiya. I don't really post much other than on the TH thread, but your little boy sounds so like mine that I had to reply, even if only to try and reassure you a bit. I think you are roughly where we were a year ago.

DS is now nearly 3 and a half. At 2 he was barely talking. At 2 and a half he had a vast vocab of words, but they were all nouns. He labelled stuff, didn't communicate with us, didn't ask for food/juice etc. In fact, he had never put 2 words together. People would say, oh I'm sure he understands everything. He didn't.

We were the ones pushing for help etc and had plenty of professionals telling us to 'wait and see' and that he was still within normal ranges for stuff. Anyway, we asked for hearing checks (which were fine), salt assessment and referral to a paed. Salt also has ridiculous waiting list in our area so while waiting for a triage appointment with them, we began private salt. DS started putting words together and by the time we saw nhs salt, she discharged him saying he looked to be learning fine, just a bit slow. This was despite never actually using his language to communicate with us.

We were given an autism dx in March. There's been a big push in our area to get waiting times down for autism assessment so it only took us about 6 months. I don't know what Griffeth assessment is but your son can definitely be diagnosed before 3.

My DS is now communicating in full sentences. He now uses language for much more than just getting needs met. He is a super happy little boy and will be starting mainstream nursery in August. Like you, I didn't think he could have done mainstream nursery a year ago but now I know he'll be fine. He is definitely not severely affected by the problems he has. His biggest issue is not responding to people when they talk to him. His receptive language has also improved hugely.

Now, please don't think I'm anti-dx. I really am not but our dx hasn't helped us much. There has been no help or support. The only person we've seen since is the EP who will assess him in August just prior to starting nursery. For us, we really only saw the dx as being useful for nursery/schooling. My DS doesn't have any difficult or challenging behaviours, he doesn't have any stims. He doesn't have a restricted diet. He responds to his name well. He has a good sense of danger. Tbh, 99.9999999% of the time, any issues we have are simply 3 year old issues rather than any caused by autism. All that said, I'm still glad we got the dx. I feel like I've got it in my pocket, just in case I need it at any time. If someone talks to him and he ignores them, I often just say he has a speech/language delay which, for now, works fine. I usually don't tell people he has a dx.

I can't say if your son has autism or not, but if I were you I'd go through with the assessments. There might be better support in your area than mine. Also, you don't have to tell anyone about his dx, if he gets one. It's information that you can disclose if you want/need to. The dx was useful for my PIL, who couldn't see DSs problems. They love him so much they'd make excuses for his language/communication problems. The dx has made them face up to the fact he has some issues and that DH and I aren't just over-anxious parents.

I think this has become quite an epic reply, sorry! But hopefully something I've said might help.

Thank you all for replying. I realise now the do will help us access help he will likely news when he is older and yes pole comment on his ignoring them if they talk to him so a Dix would help explain that.

I also see pple who are nasty about him or treat him differently will do so regardless of diagnosis.

Thank u all for helping me keep
Perspective. It's easy to let it build up and get on top of me. I feel a bit like we are on hold until we get this Dx. At the mo we live from one apt to the next. Looking to see what the various other professionals think of him.

So true zzzzz, ds2 and ds3 could both read before they spoke, mind you neither spoke until they were 4 years old.