Should I proceed with ASD assessment for my 3 year old?

Hi

My son is almost 3 and has been referred for ASD assessment by a paediatrician. I am really torn about whether to go ahead with it or not.

I feel like if he is on the Autism Spectrum, that he would be on the lower end. He can read, talk, although alot of his speech is stuff he has learned or repeating, and she has said that he would go to a mainstream school but that she has noticed some traits and with my consent she would like to refer him to assessment team.

I just don't know what to do for the best, I feel almost guilty going ahead with it as isn't 3 years old very young to be given a label?  What would be the benefits of getting an official diagnosis and would there be any negative implications of getting one, in terms of his future. I am trying to weigh it all up.

I don't want him to be singled out or to feel different. Plus if he does get a diagnosis, I am going to have to tell him when he is older.

He goes to nursery in September, should I wait and get feedback from his teacher or wait till he is a bit older?

Any advice is welcome as I have no experience  in this sort of situation. Thank you

  • I think that a formal diagnosis is a good thing as it will allow him to get the support he needs when the times arise. There is nothing negative about a formal diagnosis, but some people see a stigma in being 'labelled'. If you're autistic, whether or not you have a diagnosis, you are still autistic. Good luck :)

  • Hi

    i can only share my experience, every family is different. I have been in exactly your position and we elected at 3 to go with the process with the same trepidation you seem to have!
    My son was diagnosed at 3.5, before that he got no help in nursery and was ignored as he didn’t cause anyone any bother. He also has selective mutism so he was literally causing no bother! Diagnosis opened the door for help for him and since then he has made so much progress and he is now having SALT input and about to start occupational therapy. he is the milder end of the spectrum but still had significant difficulties. 

    On the flip side, my daughter was not diagnosed and has had no help in school until recently, she is nearly ten and now has a diagnosed anxiety disorder. The impact of not getting enough support on her mental health has been disastrous. We have just had verbal confirmation that she is ASD and awaiting reports. She also has adhd which again was not diagnosed formally until she was 8 and we paid privately as we were so desperate for help. As soon as she got the first diagnosis, the help started to come in. 
    they say you don’t need a diagnosis to access help, but that hasn’t been our experience. 
    You can also go through the process and if at the end you feel a formal diagnosis is not helpful to you, then you can ask them not to make it and to play ‘watch and wait’.  They should respect that and will provide you with a report saying there are ‘social communication difficulties’ but you have chosen to leave it a little longer to give him time to develop. After another 6 months you may feel strongly one way or another. 

    Once your son is in school the waiting list for ASD assessment is generally very long. Up to 2 years in some areas. if you wait until crisis point to make that request you may find help isn’t available when you most need it. 
    In pre school it is much shorter. Our son went through the whole process in 5 months. Diagnosis was helpful for us so we accepted it and he will enter school in September with a strong support plan already in place. 

    a comment re your concern about telling him when he is older. Honestly I still remember the day I told my then 8 year old she had been diagnosed with adhd. I explained what it meant in the best language I could find. I thought she’d be upset but her face lit up and she said ‘so it’s not my fault that I keep forgetting things?!’ The impact on her self esteem of finding out that it isn’t her fault she finds things hard has been huge! She is so much happier now. She calls it her ‘squirrel brain’ and now she Mostly laughs if she gets something wrong instead of crying and getting distraught. So please don’t assume you are doing something bad for your son, it might actually be a really positive thing for him. 

    the best bit of advice I can give, from a mum to a mum, is not to see it as a label, see it as a way of better understanding, and therefore being able to help and support your child. You only have to share a diagnosis if you want to, with those that need to know. 
    He is exactly who he is meant to be, and if that means his brain is wired a bit differently, then it’s usually helpful to understand that. If it is autism, it isn’t going to go away. Also, if it’s not, then a formal assessment will be a weight off your mind and they can give you pointers that will help with the things he finds hard.

    Also, in my experience of parenting two special kids (and one neurotypical) for nearly ten years now, you quickly forget to worry about other people’s opinions re labels etc and you just get used to doing what’s best for your kids, regardless of what others think. 

    hope that helps you a bit, but you must always do what you think is best for your child. 

  • My son is 3 in ten days and is very similar to what you’ve described in your son. He’s been under development specialist since he was 10 months. I had a phonecall from his paediatrician today. She’s said that from what I’ve told her, what she’s seen (she’s new as his old one retired) and what his nursery have described it sounds like he will meet the criteria for a diagnosis. She’s going to see him again in a few months when hopefully lockdown is eased. Since lockdown he has learnt a lot more through spending more 1-1 time with me than he did at nursery when staff had lots of children to look after. Having a diagnosis would mean that nursery, and school in the future would get more funding to provide more 1-1 support. It also means we would be given more support to help him at home generally too. He’s being referred to speech and language as well as he also directly repeats most things or gives learnt phrases in exact intonations that it was originally said. 

  • I was thinking about this more after commenting on another thread. I think what's important is to understand the traits rather than the label itself and therefore try and book time for an understanding conversation. Offer to be there or 'any questions just ask 'even if you think its too much.  The cluster of impairments and traits such as the need to stim and not be picked on in class for fidgeting, just one example can make a world of difference. 

  • Thank you, you have made some really good points that I hadn't thought of before. 

  • No worries, my nephew is 3 and has been recently diagnosed it’s helped my brother and my sister-in-law get more support - so yeah I think it can be a positive. At the end of the day a label is just that - beneath that label Is the same boy you love and care for and a label won’t change that :) 

  • Hi, in my nephew's case it was useful. There were a few occasions at school when he had meltdowns or retaliated due to provocation from other kids and if the teachers hadn't known about the diagnosis he might have been punished too harshly or suspended. Also, they can keep an eye out for loneliness, understand better if he doesn't speak up in class, or notice if he doesnt eat lunch. Even practical things like being allowed to wear more comfortable clothes and shoes could be reasonable adjustments without unduly labelling your son. 

  • Thank you, that definitely helps me see things a bit clearer. 

  • Personally I don’t think there are negatives as a formal diagnosis can open the door to additional support if he needs it at a later date and will help those who work with him to do so in a way that suits his needs. I think having certainty is better than an unknown and whilst labels aren’t pleasant it’s part of life sadly but I think the benefits far outweigh the drawbacks.