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Friday, 2 July 2021

What would I go back and tell myself when my kids received an autism diagnosis

Boy playing with technology

There is no correct way to react to your child receiving an autism diagnosis.  For some parents it can be a shock, others are worried, some are relieved.  It's normal to wonder why or how a child is autistic.  When we were at our first autism diagnosis meeting the first thing the paediatrician said was something like 'it's nothing you did or didn't do, nothing that you did wrong.'  

You could feel anger guilt or even vindicated depending on your journey to this point.   But however you feel, I think the next thing conversation with the paediatrician was less than helpful.  Because what i really wanted to know was 'what do we do now?' and they didn't really have much of an answer - just a few leaflets.  

Looking back what would I tell myself? 

A diagnosis isn’t a person

After our eldest's autism diagnosis I threw myself into everything autism.  It was the first thing I'd tell you about my son if you asked about them, mostly because it explained so much. But of course just because they have a certain condition, doesn’t mean that that is all they are. Behind every 'autistic child' is a full individual with thoughts, emotions, values and preferences - even if we don't understand them.  And my kids (after all their diagnosis) were still the same kids I had before they had their 'labels' I just got the chance to understand them better.

Seek information and support 

Where as some parents already know a lot about autism before the diagnosis, some don't.  The National Autistic Society is a great place to start on learning about the condition, strategies to help and common challenges.  There is a whole world of autism bloggers that specialise in all sorts that can provide you with insights too. 

Many parents can become more isolated after an autism diagnosis. And some people who don’t understand the condition may stop coming over entirely.  You can often find autism parent groups in your area who regularly meet to discuss the issues that they face. You can also look for recreational activities in your borough specifically set up for people with additional learning or special needs.

Think about education

Perhaps the most common thing a parent thinks about after an autism diagnosis is their kids education.  Depending on your child there are different educational options for kids with autism and SEND. They may need some extra support, an EHCP or a different kind of school or one that is specifically an autism friendly school.  You may want an educational establishment that has specialist teachers and assistants who know how to deal with autistic children.  There's lots of information about schools and what to think about - ultimately it's the same for all my kids - I want to ensure I provide them with the opportunity for the best education possible.

Look after each other

An autism diagnosis can often put a strain on relationships. You worry about the effects that it is going to have on your family life and I found it's so easy to focus all on the kids and forget about the rest of us and my partner in particular.  Recognising this is important and taking time where you can to spend together along with helping each other too.

Like I said, many parents also worry that the autism diagnosis is somehow their fault.  I've thought about which one of us is more likely to have been genetically predisposed to autism.  Would my kids have been autistic if I'd had them with another partner or what if my husband had married someone else, would their kids have been autistic.  

Completely daft I know because I love my hubby and love my kids to bits. If you’re struggling, you can reach out for help. There are counsellors with training in how to help parents of autistic children cope and parent groups like Skylarks.  There is a tremendous amount of support out there for parents so think about accessing it if you need to. 

Finally, depending on your child and their age you may wonder about whether to tell them about their diagnosis or not.  This is very personal and I can tell you that we got to the point when we knew it was time for our eldest but that it is different for everyone. At the end of the day I'm hoping you'll find that like us, you know your kids the best and probably more than you think... autism and all. 


4 comments:

  1. Great advice! I hadn't pondered this yet, you made me ask myself the same question. #KCACOLS

    ReplyDelete
  2. Great advice for me it was finding the local parent groups that made all the diffrence. Having people who can answer the 'what do I do now' and where to get information is so helpful. #KCACOLS

    ReplyDelete
  3. Very good advice thanks for sharing X #kcacols

    ReplyDelete
  4. I wasn't diagnosed until I was 21 and we'd been in the system since I was 11. It must have been so hard for my mum as throughout those 10 years she felt blamed by CAMHS etc. She has often said how relieved she was when I was diagnosed as it proved it wasn't anything she had done. She has said though that she struggled a lot with 'why my daughter?' thoughts, but then again I've also had 'why me?' thoughts. There was definitely a period of post diagnosis self pity.

    Katrina x
    #KCACOLS

    ReplyDelete

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