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My wife Clare writes a blog - Life with the Mulherns - its a great blog. It looks better than mine, reads better than mine and gives a wonderful insight into the life that is ours.
Recently Clare wrote a post entiteld Our Journey with Austism. heres the link ( https://lifewiththemulherns.wordpress.com/2022/12/10/our-journey-with-autism/ ) read it and the rest of my post will hopefully make sense.
But it basically talks about how not everyone is the same when they have autism and that each indiviudal has different needs. but what it touches on is the process that we must go through in order to get a diagnosis to access financial supports and caring supports.
But is a diagnosis the be all and end all of everything? Lets take a look.
From the age of 3 one of our children have been dealing with some behaviours and quirks that we were never entirely sure what they were about. Having looked into it more myself and Clare were led to believe that there may be autistic traits to the behaviour and we decided to start looking into it.
It gave us some optimism as we may finally start getting answers to the many questions we had.
So initially we had to just have a conversation with our GP and work out what the next steps were. brilliant I thought, this is so great. the next thing we had to do was have a basic assessment with our Health VIsitior and the point of this was pretty much a screening excerise to see if our concerns were validated and if he needed to start on the autism pathway. we were told there were traits and that we would have to go see a specialist to have this started.
But months went by and we heard nothing, we contacted the HV and the GP and we were told that we just had to wait our turn. By now, we looked into autism groups on Facebook and what we found out is that the public waiting list for that first consultation was something like 2-3 years.
This was ridiculous! i couldnt get over the fact that such a needed service was having such lengthy waiting times!
As you know by now, Im a very impatient person and iIalways need answers and need them now. So myself and Clare decided to go for a private consultation to see if we could get this covetted diagnosis that we thought would make things so much easier.
So finally in February of 2022, we attended an appointment in the Ulster Independant Clinic with a top doctor in their field and following that hour long assessment she was sure our son had autism to some degree, however it would need to be followed up with a multi discplinary assessment to cement the decision.
However, as we walked out of that appointment, myself and clare had a collective sigh of relief that what we had been told wasnt down to our parenting or anything we did or didnt do right!
Alas, i thought that was the end of it, and that we would get all of the support we needed and we would be able to manage the autism.
But i was wrong.
Very wrong.
This wasnt the end of it, and in fact if im being honest, it did nothing. Even now nearly 2 years after the official diagnosis, I feel alone trying to manage autism! I dont enough about it, I dont know how it works, I dont know how to treat it, i simply dont know!
And I think the thing is, that unless you are a highly wualified professional in the field of autism, you as a parent will never truly know how to deal with it. What you do though as a parent is learn how to adapt to the behaviours, the triggers, the meltdowns. You learn how to pre empt what will happen next. For some of us that is easier done than others and not all of us will be entirely aware.
But I will say is that having a child that has autism can be EXHAUSTING. And without going into to too much detail right now, many of you will know what this is like. Everything in your life changes. the food that the child eats. The places they can and cant go. The school. The doctor. The social life. EVERYTHING.
But get this, if your autistic child acts much "worse" at home than they do every where else. guess what? YOU'RE DOING A DAM GOOD JOB. Because that shows that the child is safe at home to let out all those feelings and thoughts and emotions. Yes you will have to endure being slapped or bitten, being hated, or items being broken or your home being damaged, but at home, your child is safe and they can express themselves in that way to you!
This is YOUR child. you love them and cherish them and that will never change!
For me, however, this diagnosis opened my eyes a little and made me think two things.
1) Where did this come from?
2) Could I have autism as an adult?
Well lets look at the first part of my question, where did it come from? Well I dont really know, however the consultant said that is somewhat hereditary and when I look back through my family tree to my grandparents, I can now see cousins, nieces, nephews, relatives who have it down one side of my family - and that is not a coincidence.
I started to connect the dots. Then the dots stopped. Because when I looked at the people in each case of autism, they were all different. They all had different attributes or mannerisms or quirks. But they all had it. I guess this is why autism is referred to as a spectrum and not just one thing and here is what the symptoms are type of thing.
The second part of my question is could I have autism as an adult? Well yes I could. Autism just doesnt start and stop at certain ages, its something youre born with and something you live with. However Ive never had a diagnosis, and its not something Ive looked into much beyond what Ive spoken about here. Would I go seek a diagnosis now? Well I dont know because would it really change my life as it is? Probably not. But could it help explain a bit about who I am or how my mind works - maybe. But again, I dont know. Maybe thats a pandorras box i dont want to look into.
As the months and years go on, I will learn about autism, I'll start to understand it more and what it is and how it affects people, my son. But what it isnt, is a disability. My son is incredible at a lot of things, thing that make me go wow for all the age of him. People with autism arent stupid, there isnt a "look" that they have and it isnt a label that they should live with and I'll make sure that my son is not going to be labelled as an autistic person, because he is a person, just like everyone else.
What advice could i give to someone who starts out on the autism trail? Thats a tough one. But I would say firstly is, don't allow other people or professionals dictate to you what your child is. Dont let anyone tell you that what you are or are not doing is right or wrong. Only you know the truth about what is happening and how you and your child are managing it. Dont be afraid to speak to other parents in the same situation. We've all been there, were all going through it. We know about the tantrums, the fights, the screaming. The fear of the neighbours calling the police thinking theres a riot in the house. Thats all part and parcel of it. But speak to people, get involved in online communities and read what other people do, try some of the techniques. But most importantly - dont label your child. They are your son or daughter, they are not autism!
What i will say though to someone starting out is this, the supports out there from professionals for families of autistic people - there is not enough support. Not enough support at home, school or in the workplace. There is a lack of professional people in roles that don't understand autism enough to make proper decisions - they look for the general signs of stims, eye contact and speech.....but thats not all. So be prepared to be knocked back in your fight for your child, but be more prepared to keep going for your child because when they dont have the voice to speak for themselves, you're that voice!
So to sum up I suppose, a diagnosis isnt the be all and end all when it comes to autism, it is in fact another stepping stone towards understanding it and your child.