admit, autism, blessing, child, condition, diagnosis, listen, love, spectrum, support

Getting an Autism Diagnosis

Do you know how hard it is to get a diagnosis of autism?

People assume you just “want to have a diagnosis” or that you’re looking for a “yuppie” condition.  And the child or adult looks normal to other people so what’s the need for saying they have this condition?

Now, if you have cancer or arthritis or a heart condition or another general condition, they wouldn’t tell you that you “just” wanted a name to this.  They would expect (as would you) that there would be help and support while you have the condition.

However, autism is not seen in this regard.

I will admit that autism doesn’t always require medication as other conditions do.  Now you could be fortunate NOT to have a child on the spectrum that has no sense of safety with themselves or others.  If they are like this, you may have to buy either larger pushchairs or an actual wheelchair for your child or adult.

And there are other complications that can arise.  For example, people who are on the spectrum often don’t sleep well. This can be extremely disruptive to the family and other people they come into contact with.

So often there are needs that should be taken into consideration.  Once a diagnosis of autism is obtained you can get help for all these complications.  And even if they are high functioning and have a seemingly good knowledge of a language, mostly they are unable to understand or express their feelings. This negatively impacts their need for medical help.

I love my son dearly, but he has complications that are invisible to you when you see him.

If you saw him, you would think everything is ok.

But I can tell you it isn’t. Luckily, he has been able to access more help and support after his diagnosis than we could before.  And this makes a massive impact on our family life. It is so much easier with the support we have both received already. And we will need to access in the future.

We have been really blessed because Johnathan has been able to have a year split placement before going into school proper.  And this has actually meant that he will be able to enter a smaller normal school and I am so delighted!  Everyone wants their child to be able to go into the normal educational process.  But not all parents have the opportunity to have this happen.

So many parents do not want to admit their child needs a diagnosis.

Maybe they don’t want to admit that their child has a problem.  Or maybe it’s because of the stigma that is attached to the condition.  There could also be other reasons for it.  Personally, I knew in his first week of life.  In my heart, although I didn’t want it to be true, I didn’t want it to be.  In fact, once he WAS diagnosed I struggled with it even though I had known it – much to my surprise.

Please, when you meet a parent whose child is going to be or has been diagnosed with autism, treat them with compassion and kindness.  You don’t know what they deal with in their daily lives and it is not an easy thing to either acknowledge or accept.  If you do want to know, let them talk.  Be there for them.  But please, whatever you do, don’t condemn them but listen to thing they would like to share with you.


Sensory Processing Disorder (SPD)

I knew the first day of the year was going to be difficult for my son.  He woke me in the morning and immediately went to the sofa and lay down quietly but with his legs constantly on the move.  He didn’t ask for the tv to be turned on, to do something on his iPad or to have breakfast.  For a boy who wants one at least of these and any combination, including them all, every morning, this was not normal behaviour.

The morning continued with a few hiccups along the way. Including a discussion about what I was wearing and what he wanted to take from home to play with while we were there.  In the end, we settled on the xylophone as he has been playing it at least 3 to 4 times a day.

We got there and, as the custom generally is in Scotland (and especially with my in-laws) we were going to toast the new year.  First of all, there was no drink out for him but one for everyone else and he went to choose a drink. Then Johnathan started to get upset when we asked him to wait to drink, thinking he wasn’t going to be able to.  Quite frankly he didn’t want to know or care about the reason why – he wanted to drink it!

From that moment on, I knew it was going to be a long day with his grandparents. 

They do try to understand him but there are some things they just don’t get –  Sensory Processing Disorder being one of them!

Johnathan started to play the xylophone between coming for cuddles or hitting himself on/off things.  Mary (his granny) was worried he would damage his joints but to me, that wasn’t really an issue.  Yes, he might hurt himself. But what was so frantic in his body, mind or spirit that was forcing him to be this way?  I had no idea!

For the first time ever Johnathan used the bathroom in the house.

However, he did have Daddy and Granny there with him.  We were all delighted he had gone somewhere other than home.

Kevin and I recognized he was seeking a variety of sensory experiences and we knew that as it was going to be a hard day we had to make it as easy for him as possible.  Lunch was food on a side table.  We both were saying that we often let him do this so food will get eaten.

The day limped on by with Johnathan varying between frantic and busy times with different types of sensory experiences to lying down. H would either lie on the bed or cuddling Daddy or myself.

Johnathan is always given his dinner before everyone else there on a low children’s table meant for toddlers.  This became a problem because Johnathan wanted to sit on one of our laps when he had finished his dinner but of course, he couldn’t.

When the four of us are there Johnathan cannot sir in the sofa or comfy chairs because there are only 4 seats and eventually Kevin got him onto the bed listening to calming down music but he wanted Mummy and kept popping out to see if I had finished eating.

Mary likes to use this day to take photos of us with Johnathan but he just couldn’t cooperate.  He was antsy and literally couldn’t stay still.

When a child is suffering like this, there is no point in trying to get them to change their behaviour because it’s impossible for them. 

The torment they are experiencing is crushing out every ability to do other than what the body, mind or spirit is dictating.

The best thing you can do is respond to each need as it emerges.  The person enduring this is unable to change their behaviour. They cannot express to you or I the reason why at the time they experiencing these feelings. They are out of control because of the sensory processing disorder.

Johnathan has a wee nap in the car. Then since he was feeling somewhat calmer for his nap, he expressed to us what had actually caused the problem.

This is the reality that many parents go through, day in and day out when their child is on the spectrum.

Poor boy hadn’t felt in control of his body all day and knew it was making him do weird things. But he was unable to change that behaviour.

These are the days when I really feel for him.  I know he is seeking a sensory experience to remove the feelings he has but his body cannot work out what to do or resolve the issue.

Anyone on the spectrum can suffer this and live a personal hell with no language to convey the turmoil inside them.  We are fortunate that our son is a high functioning autistic child and can talk but even he struggles badly on days like today.

Is it any wonder non- verbal autistic children lash out?  Would you be able to control yourself if you had a day like this?

Have you felt the echo yet?


Finding Toys for Christmas with Autism

Christmas is a joyful time of year and one I love to share and celebrate.  I’d previously mentioned that Johnathan was finally getting interested in holidays, their meaning and traditions. He wore dressing up clothes for the first time in his life at Halloween this year.  So next, I want to share with him the beauty and joy of the season of Christmas.

Many parents right now will be looking around their house, thinking of all the toys and books and clothes the children have. And are wondering what can be given away so that there is room for all the new toys to come.

Now if you have an autistic child, life is not as simple as that.

They play with toys that are appropriate for multiple skills and age ranges.  It’s difficult to know what you can get rid of and what they will want to keep.  There are parents who have gotten rid of some of their child’s toys thinking that they were now too old for them, only to find that at birthday or Christmas they asked for them all back.

This is the reality for parents with a child on the spectrum:  keep toys that your child might need but that you don’t really have space for, or get rid of the toys only to find that you might have to buy them again!

For example, the other day Johnathan was playing with a push along penguin on a long stick and it broke.  We could not console him until we showed him we could order exactly the same toy. And with no change of colour or size or anything.

So what can I do this year at Christmas?  I think it’s finding creative ways of storing his toys so that we can have space for the new ones he will be getting this year.  Next year?  I have no idea.

Have you felt the echo yet?


Good, Fun Times

I had been out to an appointment at the hospital, having to take Johnathan with me. Poor boy, this was his third trip in the week! So, to make it sound more palatable to him, I said if he was good, we would have a snack in the cafe afterward.

Now it wasn’t a big thing for me to offer for us to sit in a cafe afterward – in fact, I didn’t think he would even take me up on the offer. I had nothing I needed to do before collecting Kevin from work as I had no idea how long I would need at the hospital.

We got taken into the doctor’s room shortly after arriving, instead of having to wait so I was pleasantly surprised at the speed. But as it was the first appointment obviously took much longer than a GP one.

Johnathan was very good, playing behind us, only once asking when we would be done. So I took him to the cafe and he had a kinder egg while I had a cup of tea and just chatted about general things.

As I was getting into the car, Johnathan said: “we do have some good, fun times together, don’t we Mum?” I agreed that we do when we can chat about all different things and don’t argue. Johnathan doesn’t want or need expensive things, but a simple sharing at a table in a cafe at the hospital really made his day.

So many times as parents we wonder if we are doing the right thing in how we bring up our children and so many other things about them, too. Johnathan had it right. We do have good, fun times together and they infinitely weigh out over the bad and he is right to recognize that.

I love him with all my heart but sometimes I don’t understand him as his brain is wired differently to mine. With high functioning autism, he will probably go far in life and do amazing things that I never could, but that doesn’t matter. It’s in the little things – the good, fun times we share.

If you don’t have good, fun times with someone, why don’t you change it? It won’t take much. Just a little bit of time and a kinder egg.

Have you felt the echo yet?