This post I want to use to share some other perspectives. I have asked my Dad (Andy), Mum (Angela), two sisters (Ellie & Kate) and grandparents (Ian & Sue) to answer a few questions about their perspective of having a child/ sibling/ grandchild with autism. So over to them...
Who are you and how do you know me?
I am Andy, Hannah’s dad. I am a heating engineer although as
Hannah knows I have had a couple of career changes over the years !
What does Autism mean to you?
I guess my understanding and view of autism has changed and
hopefully developed over the years but I am definitely still learning, which I
don’t think is a bad thing. I see that autism can give such a clear view of a
world that is actually quite contradictory and that is forever refreshing to
hear, especially with Hannah’s humour added in.
What are some of the challenges of our relationship?
When Hannah was quite young and none of us knew about her
Autism, we faced challenging days where even making simple decisions could send
her into really quite distressing meltdowns. It was truly mystifying to me that
such a cheerful little girl could suddenly be overtaken with a rage and
frustration that was really hard to see. I remember that she and I would often
just walk and walk around the local park and streets while she was in this
rage, sometimes Hannah walking 10m ahead of me and I would just phone my dad as
we walked, just to talk and seek reassurance that I wasn’t being a rubbish dad.
When we got a diagnosis this made so much sense - that the
massive sensory overload of school had to come out somewhere and home was a
safe place to do this.
We began to make adjustments and learn how to give a bit
more framework to home life so that Hannah could hopefully feel more able to
express and manage some of these feelings in a way that didn’t endanger her.
What are some of the benefits of our relationship?
I think a real advantage of Aspergers for our relationship
is that I know where I stand - there isn’t any code or mystery - Hannah tells
me how it is, but she has also learnt to do this with sensitivity over the
years. I am enormously proud of the progress on the journey she has made so far
and have no doubts she will continue to amaze me, make me laugh and sometimes
make me weep (I am her dad after all and I hate seeing her or her sisters get
hurt by thoughtlessness or ignorance, let alone plain nastiness).
Is there anything I have taught you?
As Hannah grew I became ever more amazed at how she would
begin to work out solutions to challenges that she faced using some of the guidance
that amazing professionals like Judy, her SENCO, her TAs and Teresa her CAMHS
nurse would suggest to her.
I think autism has broken my heart many times because of the
situations, particularly at secondary school where Hannah was excluded or
dropped by peers, but I have been repeatedly bowled over with admiration and
pride as Hannah has found strength and determination to get through, sometimes
with grim determination and sometimes with a flourish of humour and ‘that’s
their problem’ view of a situation.
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Who are you and how do you know me?
I’m Hannah’s mum. I’m 52 and I work as a paediatric speech
and language therapist. I’m married to Andy and we have two other daughters as
well as Hannah.
What does Autism mean to you?
To me autism is so difficult to define because there is such
a huge range of skills and needs that I see everyday. No two people with autism
are the same so it’s important to never have preconceived ideas. But in some
way, to a greater or lesser extent autism effects the way a person engages with
social interaction and communication. I see in many have a desire to interact but
some challenges understanding the complex rules that so often govern this. For
others they need to be provided with a method that’s an alternative to spoken language
give them a way of meaningfully connecting with others. It seems that the autistic
community often see the world slightly differently to the neurotypical
community. But which perception is ‘right’? Can we learn from each other? I would say that autism does not
necessarily mean poor cognitive skills or a learning disability unless there’s
co-morbidity but we do need to get better at delivering education to children
and young people with a diagnosis of autism. One size does NOT fit all and if
we try to squeeze these children into the neurotypical box of course they will
inevitably struggle and possibly fail. But I know when we do make the necessary
adjustments the success can be beyond our wildest imagination. You don’t need
to use spoken language to succeed but you do need people to take the time to
learn to communicate with you in a way that works for that person.
What are some of the challenges of our relationship?
I think when you were younger I’d say the melt downs were
the hardest to manage. I’d say as you got older and found strategies to manage
your feelings that watching some of your struggles in school and with
friendships, was painful. I think dad and I would have swapped places with you
everyday if we could.
I think down time, such as weekends and holidays, has also
been challenging to ensure it’s structured enough to reduce your anxiety but
free enough to give Ellie and Kate a break as well. Managing unpredictability
has been hard at times. I’m increasingly realising that I’m not that great at
organising. I love feeling organised but not great at achieving it. I think
creating order for you has been challenging for me but now you’ve taken over
the mantle and organise the rest of us so that’s taken the pressure off a bit! 😂
What are some of the benefits of our relationship?
The benefits are plentiful! Your sense of humour stands out
most! You make us laugh so much. Learning to see the world through your eyes
has given me insight to things I wouldn’t notice or appreciate on my own. And
then you’ve been the best CPD for work that I could ever wish for!!
Is there anything I have taught you?
I learnt about autism at university many many years ago but
you teach me everyday how it feels to live with it. You’ve given me an insight
that no lecturer could ever give me. And I think you’ve made me a better and
more insightful speech therapist. So you’ve taught me LOADS!! I also think you have made me a better human being.
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Who are you and how do you know me?
I'm Ellie and I am Hannah's oldest sister. I wasn't even two when you were born so I don't really remember life without you in it. In most aspects of life we are completely opposite however this is actually quite a positive thing (especially when it comes to dealing with an injury or any other emergency!)
What does Autism Mean to you?
To me autism is a superpower; by seeing the world in a different way. I think neurotypical people can, and should learn a lot from this! After all gaining a different perspective often leads to positive change, to make the world a kinder more accessible and accepting place.
What are some of the challenges to our relationship?
Your ability to keep us all organised is mostly a blessing (since I struggle to do this a lot) but it can be quite stressful when we leave you to sort through things and then you just don’t know what might get thrown out. But I think one of the hardest things is seeing how you and other autistic people are treated by those who are simply ignorant. I think what you are doing with this blog is incredible and such a useful resource for educating those who do not really understand what autism is.
What are some of the benefits of our relationship?
You make me laugh so much, you often say what everyone else is thinking and I think that’s admirable (and also often hilarious). You are also much better in a crisis than I am (good job you’re the nurse and I’m not) you are level headed and logical and always know the right thing to do.
Is there anything I have taught you?
So much!! But most of all how to be generous and considerate of all. I’m very grateful that you’re in my life and proud to call you my sister (I often feel like you’re really the big sister in the family, which I quite like) ❤️
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Who are you and how do you know me?
I am Kate, I am 19 and I am just about to start my second year
at university. I am also Hannah’s younger sister.
What does Autism mean to you?
I recognise that Autism is very diverse, and I am speaking
from growing up with Hannah and seeing how her diagnosis has affected her. I
think Autism is far too often stigmatised and seen negatively and I really don’t
agree with this. There have obviously been hard times for Hannah, but I truly believe
that autism should be celebrated and neuro-diversity should be seen positively.
Diversity in the way we think and live makes the world a more colourful and interesting
place. Hannah and countless others are remarkable and inspirational people who
show that autism is something to be proud of and to me this is what autism
means. Though it creates challenges, it also creates so much opportunity.
What are some of the challenges of our relationship?
I’d probably say that the main challenges in our
relationship would be around planning and structure. I think that I naturally
like to have time without plans and structure, especially when I was younger
and in school. I had some structure in the week with school, which was good but
I then liked to have time with less structure at the weekends etc. However,
this is something I know Hannah struggles with. I would say it has become much easier as I've grown up as I understand this more, but also have more flexibility in my day to day life, so structured time is
actually really beneficial. I’d also say seeing Hannah when she has had
difficult times has been hard. I always want to do all I can to help, but when
there isn’t a lot to can do, I find that difficult.
What are some of the benefits of our relationship?
There are countless benefits to our relationship. I have a truly
wonderful, loving caring and funny sister who has always been there for me and
I will always be grateful for that. I think Hannah has used her experiences and
has been able to offer me advice or just empathise with me, which I always
really appreciate.
Is there anything I have taught you?
Hannah has taught me so much. She is so determined and driven and has taught me that anything is possible, no matter what people may say or believe. Even when someone says it isn’t possible, Hannah has shown me that they can be proved wrong, and you can achieve what you want to. Hannah has also taught me that labels don’t have to be a barrier and even when things feel difficult they are not impossible. I am incredibly proud of her and so grateful for all that she has taught me.
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Who are you and how do you know me?
I am Hannah’s Grandmother, Sue a keen gardener and I am Ian,
Hannah’s Grandfather and I enjoy volunteering for the West Somerset Railway. We
lived in America for most of Hannah’s live. We recently retired and have moved
back to live in Somerset. Hannah and the family use to come and visit us once a
year in South Carolina and we used to come to England twice a year.
What does Autism mean to you?
Before we knew Hannah was autistic we didn’t really know
anyone with autism. We had heard about it but didn’t really know what it was.
We remember Hannah having violent meltdowns growing up and we never really knew
why or what we could do to help her or her parents which was hard. When Hannah
got her diagnosis we started to read a bit more into autism to try and
understand more about what autism was although I don’t think we ever fully understood.
We have learnt that Hannah likes her own space which I (Ian) can emphasise
with. We have noticed that since the family got Maisie the dog she has been a
great source of therapy for Hannah which has been lovely to see.
What are some of the challenges of our relationship?
Initially it was frustrating as we didn’t know how to help Hannah
and we didn’t really understand her. Once we started to understand more it did
become easier to walk though these times and accept her outburst of behaviours.
What are some of the benefits of our relationship?
Hannah is extremely loyal and very dependable. She is also
very caring, she is perfectly suited to a career in nursing. She is fun to be
around and an excellent organiser. As we have learnt more about what autism means we
have seen more traits in others that means we have been able to be more
understanding towards them.
Is there anything I have taught you?
Yes, patience!! We now appreciate what autism is and it has made us more conscious and accepting to others. Whereas previously we may have seen it as bad behaviour or poor parenting we now have a more open mind to accept the individual for who they are in that environment and more sympathetic to that individual and their family.
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Thank you so much Mum, Dad, Ellie, Kate, Gran and Grampafor sharing these thoughts. I really hope that it will be of help to anyone who is reading! I also want to say a massive thank you to you all for your support over the years. I know that there have been challenges that each of you have helped me with in different ways, your support is invaluable.
I want to echo this to every parent/ sibling/ grandparent (or any other relation!) of an autistic individual no words can describe how incredible you all are!
In the coming weeks I am planning on doing a similar post from the perspective of some of my friends so keep your eyes peeled!
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