10 lessons learned after an ASD diagnosis

This time last year we were waiting for a referral to the local Child and Adolescent Mental Health Clinic. Our son, 5 at the time, had displayed incredibly challenging behaviour for around two years and finally we reached the point where we had to admit we needed help.

Now, we are about four months on from an official ADHD and ASD diagnosis (mild-moderate Autism Spectrum Disorder) and nothing has really changed in that we are not using medication, we haven’t had any parenting classes and there is no official school support (yet). Despite that, the process of the diagnosis itself and the reactions of ourselves, our son and other family and friends have taught me some things.

  1. If you’re not coping well with your child at home – do talk to someone about it, whether that be your GP or a friend. You can’t exist in a vacuum and talking about it will help you determine at what scale on the ‘normal’ level you are operating. I don’t mean normal in terms of your child, I mean normal as in parenting is hard, but it shouldn’t be so hard that your family isn’t functioning, which is the stage we had got to. If you’re at that stage, seek help.
  2. Even if you are expecting a diagnosis, it can still be overwhelming to hear a professional say the words. I had pushed for my son to have the ADOS test which diagnoses ASD because I recognised so many of the symptoms in his behavior. I still, somewhat dramatically,  burst into tears when the Social Care Leader at the clinic told us they were giving him a diagnosis of mild-moderate ASD. It’s a big deal, allow yourself time to come to terms with it all.
  3. Everything will change and nothing will change. The reality is that you will receive the diagnosis , but your day to day life will remain the same. Neither you nor your child will change overnight. In my case, I found that I was able to remain calmer, understanding what was the cause of his most challenging behaviours – but they were still challenging, make no mistake, and I still lose my temper at times; which leads me on to the next point.
  4. You are not a superhero. You will read a lot of pinterest style inspirational quotes telling you that God chooses special people to parent children with Autism. I’m afraid this isn’t true and I find it spectacularly unhelpful. It’s bloody hard work parenting a child with ASD a lot of the time – and I’m not a supermam, I’m just a regular parent trying her best like everyone else.
  5. An open line of communication with the school is vital. We were lucky at the time of diagnosis that my son had an exceptional teacher. His new teacher this term is much less experienced and he is not yet receiving any official supports – this is no-one’s fault but just means it’s important we keep in touch with the school to make sure my son is getting everything he needs. You can’t coast your way through this. road
  6. You will read a lot. You will be overwhelmed. Remember that all kids with ASD are different (yes, just like everyone else) – you might have to try lots of different things to find something that works for your family. More helpful than reading , is talking. If you can find anyone in the same boat -talk to them. (You can email me if you want, I would be delighted to talk to you.)
  7. People, generally, know absolutely nothing about ADHD and ASD. Lots of people will want to tell you that your child is just ‘naughty’ or a ‘typical’ 5 year old. This is not true. The tests that diagnose ASD and ADHD allow for the fact that your child is 5 years old – they are not expecting him or her to demonstrate the composure and common sense of an older child. If your child is diagnosed with ASD it is because they are demonstrating behaviours which do not align with perceived neuro-typical behaviour for their age.
  8. You will experience a period of relative calm and ease and everyone around you will start to tell you that the diagnosis might have been wrong and that your child is growing up.  You will sigh. You know your child best. You see the little struggles in him. You will be the receptacle for the expressions of his stress and frustration, where others are not. You will, unfortunately, get the worst of him. This seems harsh, I know, but there are moments when my son is frankly unpleasant to be around. It might not be his fault, but it doesn’t make it any less true.
  9. There will be moments when your child achieves something beyond your expectations and you will burst with pride.
  10. Give everyone in your family space to be themselves: an ASD diagnosis can impact everyone, don’t forget about how it might be affecting any siblings. It can also place a strain on your relationship with your spouse. Remember this, and give everyone a break.

Disclaimer: This is how it was for me ,my son, and our family. I’m not telling anyone what ASD is like, or how to deal with it. But this is our story, and it might help you , a little.

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19 comments

  1. What a lovely post. I also agree with if anyone is struggling then to ask for help. We got to a point were wr coukd no longer cope. I was scared to ask for help, incase my parenting got blamed. My one regret is not asking for help earlier. We are just at the beginning of the diagnosis process for my 10 year old. Xx

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  2. I’m glad I read your post, even though it’s not the same thing we are having one of my children tested for Sensory Processing Disorder (SPD), which could account for a lot of her behaviour. I’m keeping this post to help me as I ponder what to do and how it could affect pur family

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  3. This is excellent

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  4. I love this. I agree with every single one.

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    1. Thank you Vickie, I really appreciate that

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  5. Excellent post! All very true and so real for me. I have a similar post sitting in my drafts about how we coped after diagnosis. I certainly haven’t written it as well as this. Thank you!

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  6. Going through a diagnosis is tough. Great insight!

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  7. Wow! Just wow. Every point completely sums up our experience. Beautifully written.

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  8. My friend is going through the system. Her son has just started school but luckily they have excellent provision, this shouldn’t be ‘luckily’ it should be across the board. Are you in touch with Face2Face by Scope, it’s a fab befriending service.

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  9. I recognise all of these points hun but no 8 is a particular problem for me. i don’t need people to tell me he seems ‘normal’ or ‘but you can’t tell’ or ‘he’ll find his way’ or ‘he is doing so well’ BUT I can understand that others just do not see those daily struggles which is why I started writing my glimpse into autism series. Always here for a listening ear! Thank you for linking up to #ablogginggoodtime πŸŽ‰

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  10. This is a brilliant post and will be really helpful to many families, I am sure. I can’t believe people feel the need to say ‘he’s just naughty’ & the like, I think that’s shocking. I hope you start to get more support from the school soon. #ablogginggoodtime

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  11. I identified with every single point you made, especially point 3.
    I would wholeheartedly recommend getting help and finding out more if you are struggling with a child whose behaviour is challenging.
    This really is a fantastic post. Thanks for writing it. #ablogginggoodtime

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  12. Very insightful and suppose you learn as you go X #ablogginggoodtime

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  13. These type of posts are so useful for other parents in similar circumstances. Thanks for sharing on #fortheloveofBLOG and best of luck

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  14. It must really help if you have a good school/ helpful teachers, so you can keep that continuity and conversation going. I don’t like the idea of people telling you the diagnosis could be wrong to try and make you feel better. The point is now you know for sure and you will have access to help/guidance and you can build from that. Your such a good Mum and this a great post #stayclassymama

    Liked by 1 person

  15. Great post and all your points are very helpful and true. My son was also diagnosed with moderate asd. I have him in a regular elementary school but have retained expensive intensive behavioural therapy conducted daily. It may eat up all my savings but if it helps my sons independence in the future, no expense or efforts on my part will not be put to use.
    My one added comment would be that in terms of recommended treatment, do look into whether your diagnosing doctor has given your child the fairest and best. In my case that didn’t happen. Hence the IBI therapy I have to finance privately, and ever since my son has started this treatment, his learning and speech/communication have exponentially increased. If I had listened to the doctors treatment recommendation if only ABA and speech therapy, my son would still be nearly non verbal. Doctors do make mistakes. I am now in the process of challenging the treatment recommendation in the hopes to get some publicly funded IBI therapy.

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    1. *meant to say all my resources will be put to use to help my son

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    2. Thanks for reading , I don’t know the US system but it doesn’t seem fair you have to pay to help your son. I hope things work out well for both of you – it’s hard

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      1. Close. We’re in Canada. Treatment does get covered but it is up to doctors to decide whether your child is ‘eligible’. If you ask me, a child who has severe speech delay, comprehension delays and problems with fine motor skills, should automatically be eligible. I feel we were wronged with the treatment diagnosis, and I am fighting this. Shockingly I am not alone in this boat. Some provinces cover the treatments with the provincial health care plan. Ours just doesn’t, leaving countless parents and their affected children out to find their own way somehow.

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