Autism and the denial of the Diagnosis

Accepting Autism the Denial Stage

Denial, Not me and not my child!
Denial, Not me and not my child!
Its a mistake, it is not autism!
Its a mistake, it is not autism!
I am not listening to the autism word!
I am not listening to the autism word!
There's no autism in our family!
There's no autism in our family!
You are talking about someone else's child.
You are talking about someone else's child.
What do you mean autism?
What do you mean autism?
What do you mean my son is hyperactive?
What do you mean my son is hyperactive?
Not my child, I don't want a label.
Not my child, I don't want a label.
Hide from that word, its not us.
Hide from that word, its not us.
Stages of accepting an Autism diagnosis.
Stages of accepting an Autism diagnosis.
Autism is just another way of being
Autism is just another way of being
Accept my autism and help me.
Accept my autism and help me.
A label is a pathway to help and support.
A label is a pathway to help and support.
We are no less a family now. Me and mine.
We are no less a family now. Me and mine.
Next article when the autistic mom gets angry!
Next article when the autistic mom gets angry!

Autism the Denial Stage

As a parent when you are first told that your child has an Autism Spectrum Disorder it has often been described as being similar to a loss i.e. the child you expected to have is gone. All the normal thoughts and hopes you had for the future have now been drastically altered. You can't breathe. You'll never manage it. Why were you never prepared for this in any of the pregnancy books that you read?

These thoughts can often lead to us parents feeling huge grief and guilt. Despite having these feelings the reality also is that your child is not actually gone anywhere. Instead your baby is still with you and now needs a lot of help and support with everything in life. Yet where do you find the strength to do this now that you are in bits? How can you possibly be expected to find the inner resources to cope with all this now? When all you really want to do is crawl into a hole and hide. Now that everything that you had carefully mapped out for the future of your whole family has now been blown to smithereens!

Firstly stop and don't be so hard on yourself. Your feelings are perfectly natural. You now just need to allow yourself time to adjust. It is often documented that a diagnosis of having a Special Needs child can invoke feelings similar to a type of bereavement. So just like any other trauma in life it is natural that you will go through a process of crashing and burning. Trust me though before you will eventually can come out the other side resigned, stronger and so much wiser.

The most common stages you may go through after receiving an autism diagnosis are often as follows.

  1. Denial
  2. Anger
  3. Bargaining
  4. Grief
  5. Acceptance

The Denial Stage: This is one that I have already spoken about in part one of this series so please have a look at this also. For me personally when I was going through this stage I actually had no idea that I was purposefully blocking the truth out. For well over a year I spoke to various different medical professionals and repeatedly asked them ‘what is wrong with my child?’

In Ireland it is exceptionally hard to make any progress when you are in the denial stage of an autism diagnosis. This is because the Politics behind Autism in Ireland is all about convincing vulnerable, concerned parents that they are imagining things and that there is actually nothing at all wrong with their child. Often parents are actually advised that what they really need to do is to sit back give it some time and perhaps say a few prayers as well while you are waiting. Then in time miraculously the autism might just disappear in a puff of smoke if you ignore it for long enough! Seriously I am not joking this really is how bad it is for autistic children and their parents here in Ireland.

The Irish Health Services are now broken beyond repair and hugely underfunded as well as being evermore sparsely staffed. So the last thing the powers that be want is to have to give another child an autism diagnosis which will then mean a further distribution of their very scarce resources.

I was given all the usual platitudes that every parent of an autistic or special needs child will be very familiar with. Some of these reassurances included:

  1. Speech Delay is very common so do not be worrying yourself about it yet.
  2. He’s just a bit shy but he’ll grow out of it.
  3. Yes he may have some behavioral issues but is there any chance that maybe you are just a bit overindulgent with him?
  4. Or worse again if your child has issues maybe it’s because his mom has them too?
  5. You don’t want to label your child just like that do you? Wait a few years first until he is too old for Early Intervention. Now we know that that might not actually be best for him in the longer term. But you sure will be doing your bit for the Politics behind Autism in Ireland and saving the Irish Health services money. Why? So our government can give it all to our corrupt banking system instead naturally.

To me these type of fob offs are unjust and inhumane. We are talking about the protection of vulnerable special needs children here but sometimes in Ireland you are just made to feel that you are more like a fraud, a neurotic mother or someone who just likes sticking labels on your child just for the crack of it.

In Ireland there is a never ending quagmire of Autism Politics, at every level of our society. After a couple of years of wading through the red tape and seeking help at every turn. Having doors slammed in my face is now pretty common. I have now also come to the very sad conclusion that nobody involved in the politics behind Autism in Ireland actually cares one bit about my child’s future. Instead you have opportunists, autism industry entrepreneurs and worst of all some Autism Advocacy groups who prey on vulnerable parents.

Often we are being duped by smart PR and Social Media campaigns into believing that we are raising money to help get support and services for our autistic children. When in actual fact most of the money donated to some Autism Advocacy groups is actually being pumped into finding a cure for autism. In Ireland this then usually means that there are just no state or charitable funds left to help provide vital therapies for autistic children like my son.

Every day in Ireland I see this happening and as a woman with Aspergers myself it greatly aggrieves me that things appear to be no better for this generation of autistic children than they were for me three decades ago. My son like so many other autistic children in Ireland needs an awful lot more services than he is currently receiving.

Unfortunately in Ireland at present the waiting lists for everything are very, very long. When I started on my autism journey I was very naïve and I assumed the Irish Health Services and Autism Advocacy groups actually thought like me i.e. that my child is precious and all children deserve to have their basic human rights satisfied. I also trusted certain members of the medical profession when I was reassured that everything was fine but of course I was now also wracked with guilt that I had just been imagining that there was something wrong with my son all along.

It keeps me awake at night when I think about all the Special Needs children in Ireland who are getting no help or assistance whatsoever because when one or both of their parents seek help they are often sent away by their doctor. Often in this country it is those that we place our trust in who are misleading vulnerable parents because they themselves are deeply embroiled in the whole Politics behind Autism in Ireland.

Knowing all of this I do often think that it is no wonder at all that so many Irish parents often remain in denial for a long time. The whole system is geared to keep you in denial and if that's where you are now then the government, the medical profession and health services will gladly accommodate your denial every step of the way. Coming out of denial is a mammoth task in itself and just thinking about this is making me very ready for the next installment of this series i.e. Part 3: The Anger Stage.


Dr Barry Prizant talks about his Early Intervention model

Dr Temple Grandin - World renowned Autistic woman

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