Autism – Life After Diagnosis

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The BBC is currently running a series called The A Word which is based around a little boy who has autism and his family’s struggle to come to terms with it. So far, his mother has struggled to come to terms with the diagnosis and while I can understand why some parents might feel like that – it wasn’t my experience..

Autism was suggested as a reason for his behaviour when he was 3 years old but prior to that we hadn’t considered it as an option. I knew very little about autism so I researched it and soon realised that he ticked all the boxes. One year later he was diagnosed.

The formal diagnosis came via a phone call. The pediatrician had told us unofficially that our son was autistic but she needed the full report before she could make it official and she was waiting on the speech therapist who hadn’t yet seen him in clinic. A change of plan on the day of his speech therapy appointment threw The Boy into a major meltdown to the point where the therapist was unable to work with him. As distressing as the meltdown was – we were quietly pleased that this would be going in her report. A few days later later the consultant phoned and gave us the official diagnosis of Autism Spectrum Disorder with Sensory Processing Disorder.

How did we feel?

Relief, mainly. We had concerns for the future, but what parent doesn’t? Before that I was more worried about him not receiving the diagnosis or having to wait because that meant he wouldn’t get the full support that he needed.

Having read a lot of blogs from autism parents it’s clear that we’ve been lucky. We’ve had no problems at all in getting an assessment, diagnosis and subsequently the right support. I know that many parents are not so lucky but each of us can only speak of our own experience as we find it.

Why Go For A Diagnosis?

Some people live their entire lives knowing they are autistic but never getting assessed formally. When you look at the figures for the amount of people in the UK who have autism, I would suggest that the actual figure is much higher. For some people, they know and it’s enough.

Early intervention makes a massive difference. The Boy copes in mainstream school with one to one support. Without it life would be very different. When I was a child, Leo Kanner’s narrow opinion of autism still influenced attitudes and my son would have been labelled a troublemaker and most likely expelled.

A diagnosis can:

  • Provide relief to the person and their family.
  • Allow access to services only available with a diagnosis.
  • Give better understanding of how to cope with any problems.
  • Provide access to financial support.

How To Get a Referral

Our journey was different to a lot of families as our son’s nursery manager approached us with the suggestion of autism. The child psychologist observed him at nursery and agreed that he should be assessed whereas most parents start with their GP. The one thing I would urge all parents to do is to document unusual behaviour when it happens and note what was happening prior to it.

If you suspect your child has autism:

  • Make an appointment with your GP. Prepare notes on what you want to say in order to get the most out of your ten minutes. If you feel you require a longer appointment, request one.
  • Keep a diary to log unusual behaviour.
  • Not all GPs understand autism. If you are not satisfied, ask to see another one. Trust your instinct!

Diagnosis and its Effect on the Family

Every parent/family reacts differently to diagnosis. For some it brings a sense of relief, for others they grieve for what they feel they have lost. It’s important to understand that your child is still the child that you’ve always loved. The only difference is now you understand that they have a condition and it’s down to you, with support, to ensure that they reach their potential in order to live their life to the fullest.

Siblings

Caring for an autistic child can be all consuming but you need to make time for your other children. Remember that autism affects the family as a whole.

Looking After Yourself

Caring for an autistic child can be mentally if not physically exhausting. It’s important to take time out for yourself in order to re-charge the batteries. Don’t be afraid to ask for support and accept it when it’s offered.

Talk

The one thing that’s kept me from going completely doolally is being able to talk about how I feel with other autism parents and sympathetic friends. Being able to talk (or type) things out can make all the difference in those low moments that we all experience. I’ve also phoned the NAS helpline a few times and they have been helpful and informative.

The helpline number is 0808 800 4104

Autism doesn’t begin with a diagnosis. It’s been there from the start and it will be there in the end but the right support can make all the difference. The difference in The Boy after three years of support is nothing short of amazing. He is loved and accepted for who he is because he goes to a wonderful school with people who care. More importantly, he is happy.

I gave some thought to potentially burdening him with a label but the benefits of diagnosis outweighed the negatives, especially with him being so young. Hopefully when he comes to leave school in twelve years time- having autism will no longer be an obstacle to employment thanks to programmes like Employable Me which highlighted how valuable an autistic person can be to the workplace when given a chance.

Ours is a relatively positive story but it’s not the case for everyone. There are some children whose autism is so severe that there is little hope of an independent life and that must be absolutely devastating for their parents to cope with. It certainly puts things in perspective for us. Life can be difficult but we know it could be a lot worse..

Life with an autistic child is an emotional roller coaster or at least that’s how I see it. There are highs and lows in every day. Sadness and joy. Hope and despair. Resignation and determination. Courage and fear.

But always there is love.

Sons, Sand & Sauvignon

 

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13 thoughts on “Autism – Life After Diagnosis

  1. It’s so important to share every kind of diagnosis story, good or bad, as no two families will experience the same.

    And I totally agree that early diagnosis if possible pays dividends in support and in acceptance – if young kids see that Timmy or Jane has someone to help them aged 4 or 5, they just tend to accept it, and then it’s part of life.

    The caring for yourself part is so often over-looked, and I’ve been guilty of it myself, but we should all put ourselves first at times, even if it is just locking the bathroom door with a tub full of bubbles and the latest novel.

    Great post missus 🙂

    Liked by 1 person

    • Thanks lovely, a tub full of bubbles and a good book (with the door locked) definitely helps to recharge the batteries for me. We love our kids but time out is important and you’re right..many parents forget that they need it. 🙂 xx

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  2. A great informative read on your life with the boy who has his life lived around his autism spectrum, how you got there and what his future might hold. Being a friend of yours and other mums with children with autism, I’ve grasped already what you have written in this blog. I know we say that they are on the autism spectrum but I think some people new to this world might just be shocked to see the distance from one end to the other. That’s why you should see your GP if in any doubt because not all cases are blindingly obvious. One thing I think you have left out and I can understand why, is the praise that you should give yourself and yout hubby, not forgetting the positivity and love he gets from his older brothers and sisters. The Boys life was in your hands and he lives the life he wants and that he is so good at, because of you. You must take the most credit Tracy!
    It’s not hard to recognise the strain it puts on family life, even if you’ve worried about something that’s cropping up, you can’t enjoy it until it’s over, waiting for the start of a meltdown and then having to have a Plan B ready and put into action. Society relies far to much on carers (all carers, be it kiddes caring for parents, parents caring for their parents) our health system would be broke without carers. The Government/Systems take this all for granted and don’t step in until the carer themselves are at breaking point, this is so wrong. I know how much you love The Boy Tracy, you don’t want to be away from him for weeks & weeks on holiday without him, NO……but you do recognise that for a healthy life for you and hubby a few hours chucked your way would certainly enable you to enjoy simple things like a lunch out without fear of an overload on The Boy. Would it be to idealistic that when a child gets statmented, your home life should be looked into and respite vouchers given as necessary per that family. Luckily The Boy is your youngest by a long way, so no other little ones are vying for your attention but for those families who do, they should be able to have time to meet the needs of their other children, like time to take them to the cinema. That’s what’s needed, a voucher book with each autistic child and you can use the *time vouchers* when and as is needed.
    Big love and kisses to you all ❤️❤️❤️❤️❤️❤️Xxxxxxxx

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    • Thanks for this wonderful comment Sheerie. We are lucky in that his siblings are all grown up and don’t live with us but this isn’t the case for the majority of families. The A Word does touch on this with the daughter standing there talking to her parents and they are not listening to her because they are too busy arguing over Joe. Her relationship with her brother is a lot less complicated and that’s good to see as she just sees him as the brother she’s always known. I like how they’ve done that. For families with babies and younger children it must be very difficult indeed. I often struggle to cope with just the one child so I can’t imagine what it’s like to have to cope with others who may also be on the spectrum as often happens. All we can do is tell our own stories and then people will get an idea of how vast the spectrum really is. Big loves xxxxxxxxx

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  3. This is such an informative read and would be so helpful for parents who are at the start of the journey and not sure what to do. It sounds like you and The Boy have come such a long way, thanks to the support of professionals, but also down to your own hard work and commitment. You are an amazing mum!

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  4. Glad to hear you’ve had good support. I agree with you, I think the numbers of autistic people are much higher than thought! Great pointers in this – I always give the ‘keep a diary’ tip as one of my first ones too x #spectrumsunday

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    • Thanks Steph, writing things down also means that you know you didn’t imagine things. Those things really did happen and it’s very helpful especially during the assessment. X

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  5. Great post hun, great tip in there about making notes about behaviours and preparing yourself for those appointments. I always come out remembering 100 things I wanted to ask, and stumped when I am asked why I have concerns about a particular area. Thank you so much for linking up to #spectrumsunday lovely, It will be live later today, I really hope you join me again this week xx

    Liked by 1 person

    • Thanks Clare, I’m used to writing things down for myself as I my mind goes completely blank in those situations so it’s helped me on numerous occasions. See you there. 🙂 xx

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