Autism – If Only I Knew

It’s Autism Awareness week and I am sharing what I know and what I wished I’d known earlier.

I have two, possibly three children with high functioning Autism.

If your child is not developing properly as a young child or baby then your health visitor will generally lead the way to seeing if your child has autism or other special needs. Often, though, autistic children can slip through the net and diagnosis does not happen early. My eldest child was not diagnosed until he was twelve years old. This was partly my fault, because although I knew he was ‘different,’ I did not know anything about Autism and thought he was just an awkward child.

It’s not easy to admit there is something wrong with your child.

This is often the first hurdle, admitting that your child is different, that something is wrong. With my eldest, both myself and his Dad would not accept that his behaviour was anything other than him being naughty, a typical boy. His Dad would say, “he’s just like me when I was a kid.” But he wasn’t. Well, he may have been, but his difficulties lay much deeper, his problems more complex. They appeared more obvious as he became older and he needed help.

With Star, it was different. I accepted that she was having problems just like her older brother, and had thought that maybe she too was autistic. However, I still kept my thoughts to myself until her teacher at school said she thought she might need further intervention and asked us to refer her to a child psychologist. We did, and she was diagnosed at six years old. That’s a whole six years earlier than her brother. And I’m so glad that we did because she has coped so much better with school than her brother did.

Now, we suspect that the Little Man may have issues. Only it’s hard to admit. Is he autistic or not? We have had suspicions and his early years definitely point to it, but his Dad swears he’s just like him when he was a child (Is history repeating itself?) The Little Man is having a difficult time at school and I’ve suggested we get him some help, maybe a talk with a psychologist, see if he is autistic. His Dad thinks we should move him to another school. I do think that a new school may be the answer for now, but not long term. You’d think that this far down the line it would be easier to admit to there being something wrong, but it really isn’t, not ever.

It’s Not Easy to Get a Diagnosis

This is one area that seems to have gone backwards instead of forwards. It is said that there has been a huge rise in autism diagnosis, but because of the rise it is taking longer for the diagnosis to take place.

With my eldest, I know I held off getting him a diagnosis, but once I’d got past that and arranged for him to see a psychologist, the diagnosis came quite quickly. There was an interview with me and him. A little interview with him (which didn’t really happen because he refused to speak to her.) And a report from his school. That was it, a diagnosis of Asperger’s Syndrome.

With Star, again the diagnosis was fairly straight forward. The main difference was that  instead of a report from the school, she was observed at school. Her diagnosis was High Functioning Autism.

Now we are still considering whether the Little Man has Autism or his problems are related to something else. The school has raised concerns so we went to the GP who told us he couldn’t refer him. The next step is to ask the school to refer him for assessment, but as I’ve already stated, the school has already told us they can’t  and that it’s down to the GP. Already we are being passed from pillar to post without any help and we haven’t even reached the assessment stage.

 

Why A Diagnosis helps.

I’ve found with both my autistic children that once they get a diagnosis things start to get better. On a basic level it seems easier to accept that their behaviour is so different because they have a diagnosed condition. They still need disciplining like any other child, but deep inside it helps to know that they can’t help it. School life can also become easier. These days a lot of school have a good understanding of the needs of an autistic child.

With my eldest it was more difficult because the school were unhelpful, they had no idea how to cope with a child with autism and their first step was to put him in the special needs unit.

Some autistic children do not have learning difficulties, my children don’t. Putting my son in the special needs unit was the worst thing they could have done and he rebelled, a lot! Eventually, after several meetings with  the school I decided my only option was to take him out and teach him at home. This triggered a whole lot of help that I wasn’t offered before.

He had a tutor that would come to our home and teach him one on one. Then he was given a place at a special school for children who couldn’t go to a regular school. This ranged from children with sickness, broken limbs, emotional problems and young pregnant girls. My son fitted in fine. He didn’t have to speak to anyone or make friends which suited him fine, but he did get to learn and eventually do his GCSE’s. It wasn’t problem free, I lost count of the number of times I had to go and collect him and bring him home because he was ‘acting up’ or being unresponsive. But, it worked for us, much better than his previous school. None of this would have been available had he not been given a diagnosis.

I’ve written a lot about my daughter at school. She goes to a mainstream school which is very good with it’s autistic pupils and she is getting along fine.

The Future

The future is the unknown with any child not just autistic ones. But deep in your heart, when your child is autistic you have to accept at some time that the future may not turn out the way you wish it to. If your child is high on the spectrum then you will probably realise that your child will always be with you and the independence you would normally expect your child to achieve someday may never happen.

With a high functioning child, or one low on the spectrum you may have hopes that they will achieve some independence. When my eldest was 19 yrs, he was put forward to a scheme of independent living, where he would have had his own little apartment but still have someone keeping an eye on him. The decision was that he wasn’t suitable for the project. Half of me was relieved, it’s hard to let your child go, but the other half was disappointed that he couldn’t go out into the world and fend for himself (or partially fend for himself at least.)

Star, has ambition, and I do hope that one day she achieves a lot more than we expect. But although I’ll encourage her all the way I will always know that her autism is the hurdle we will have to overcome if she is to achieve independence. I guess, I have learnt my lesson.  A little too late.

 

Check out these Autism Blogs:

http://www.stephstwogirls.co.uk/

http://autisticnotweird.com/awareness/

https://josephamazingspectrumcoat.com/

http://www.autismwithlove.co.uk/

https://faithmummy.wordpress.com/

http://www.rainbowsaretoobeautiful.com/

http://thesensoryseeker.com/

https://mummyhereandthere.co.uk/

https://mummyest2014.wordpress.com/

https://pdaparenting.com/

Monday Stumble Linky

 

6 Comments

  1. Rebecca Greenway
    April 2, 2018 / 10:28 am

    I know parents who have autistic kids and they do such a wonderful job. They have said that diagnosis helps also.

  2. April 2, 2018 / 7:34 pm

    Its interesting (And frustrating) to see the parallels in hurdles to diagnosis. When it was clear j needed OT intervention the school would say it was the GP who needed to refer and the GP would say school. Its also interesting to read what you say about the acceptance of whether there is something wrong. With J it was so clear cut once he hit school years but now we’re facing a grey area with another of our children and not knowing whether its right to go down the route of diagnosis or not.

  3. April 3, 2018 / 7:11 am

    Hi Anne, getting that early diagnosis is crucial to an autistic child’s development. We battled for years to get Greg’s diagnosis, we were told all sorts, his muscle disorder made it easy for medical professionals to dismiss autism, even though his very first therapist suspected he was autistic but didn’t have the power to diagnose him. It’s very much a power game here and rarely do departments work together. When we did finally get that diagnosis I was so relieved, even though no help was forthcoming it meant that I knew what we are dealing with (my husband is still pretty clueless I’m sad to say). They do say that autism runs in families and even without official diagnoses I have a feeling that the quirkiness of my family on my Dads side is probably more than plain old quirks and some behaviours now make sense. Your older son sounds very much like Gregs and it is heartbreaking to see.

    xx

  4. April 7, 2018 / 10:38 am

    Firstly I think you are an amazing mum Anne. I can only imagine the obstacles that you have to face.
    Well done for raising awareness. I am sure there will be lots of parents out there who will find this really helpful.

    Thanks so much for sharing with #MMBC. Have a lovely weekend xx

  5. April 12, 2018 / 12:21 pm

    It is never too late. I know the feeling of “what if…?” when thinking back at early signs, the lack of ambition in a lot of the (fairly limited) support we recieved, and our own reluctance about getting a diagnosis in the first place. But there are a lot of people who make amazing progress later in life too. And the brain is more plastic through adulthood than what was previously thought. So try not to blame yourself or feel too much bitterness over what might have been (I know this is difficult though), and try to keep your focus on the now and the future. Also, I hope your youngest will get the help needed, it sounds so very frustrating with the GP and school passing the buck, grrrr… Big hugs x

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A little Note About Positive Reviews on Raisie Bay

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