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Family in denial!!

iestyns_mummy

My little boy is 22 months and I have recently been told that he shows signs of being on the autistic spectrum after having an M-CHAT assessment.

I first noticed there was something not right about my child from about 12 months. I first thought that he may be deaf, because he would not respond to his name. I would say his name about 20 times and there would be no response what so ever! I then noticed that when I was trying to call him he would not respond but then if the theme tune to his favourite kids program came on he would turn his head straight away. From this moment I knew that he wasn't deaf but just had selective hearing.

As the months have gone by I have noticed that his development is not that of a child his age..bearing in mind my son is 2 in January!

He does not speak a single word not even mum or dad! He does not try to communicate with us in anyway such as pointing or waving bye bye. His only form of communicating what he wants is to cry...in which case I have to guess what he wants!

I then notice odd behaviours, which at the time I thought was just a bit quirky! Such as he would go in the recycling box in my kitchen and starting lining up empty milk cartons and cardboard containers...often putting them in size order! 

He loves to play with his mega bloks and one day I was watching him and he was separating the colours into piles...he now does this often when he plays with his mega bloks. He also loves jigsaws some of which are quite complex for his age.

He loves to play with his toy cars and is fascinated by anything that moves or spins across the floor.

The last few months he has had an odd obsession with anything that opens and shuts such as doors, drawers and books. Although he does not take anything out of the cupboard he gets excited by the slapping action of the door, draw or book. He can easily do this for an hour and a half without getting bored! When he get excited he will flap his hands or flick his fingers in front of his face. If he is sitting down to do this he will also straighten out his legs and twirl his ankles vigorously.

Another obsession he has is with anything silver or shiny. If he sees these items he will automatically put it in his mouth.

I have often wondered if my son has ADHD. He is very hyperactive and is often walking and running on tiptoes and barely ever sits down. He is busy all day!! Sometimes he can get very aggressive, to the point where he is biting, head butting and kicking me. They are intense tantrums which can last for up to half an hour!

The last month or two I have been concerned as he has been making this loud deep growling noise when he has a dislike to something or an unfamiliar place, putting his hands to his ears.

At nursery he will not sit with the other children at lunch time and has to be sat on a seperate table.

Baring in mind everything that I have explained above, it is important to realise that my son often makes eye contact and is generally a very happy child. He has also recently learned to clap his hands!

He is due to see a paediatrician on the 12th nov and he is starting speech and language therapy on the 20th nov, so I have not had a proper diagnosis as yet.

The problem is that my partners family are in denial about the whole situation. They tell me that there is nothing wrong with my son and that he is a normal child who just has a speech delay. My partner agrees with me that there is a problem although we don't know as yet whether it is a mild or serious problem.

After I had my son, I was diagnosed with severe post natal depression and me and my son was placed in a mother and baby mental health unit in Cardiff for 10 weeks, whilst there they told me that I had PTSD around birthing as I had a difficult birth in which I almost lost my life and that I had bipolar disorder. They put me on medication and I received cognitive behavioural therapy.

I came off my meds in April as I felt I wasn't functioning properly....always feeling tired and depressed with no get up and go which I felt was affecting my role as a parent. I still see a community psychiatric nurse who comes to review me every few months.

My partners family are saying that I am imagining my sons problems and are using my mental health problems against me, saying that I'm paranoid and that I need to go back on my meds. These comments hurt me as I felt that I was getting better not worse. PLEASE understand that I am not going mad, even though sometimes I feel like they make me think I am! 

I have been to university and have studied education including modules on special needs and autistic spectrum disorders. I have worked with children for many years including one to one with an autistic child. But my knowledge and experience does not mean nothing to them. They say that my son is just gifted and that there is nothing wrong with him.... Which I do agree that he is gifted but I know that something is not quite right with him. I have also been discusted by some members of the family speaking bad about me saying that I am making my son out to be 'retarded'....a word used by them and not myself. Which shows a lack of intelligence and ignorance towards autistic spectrum disorders.

Please can anyone help me? Or have you experienced similar experiences with family denial yourself? Your advice would really be appreciated.

Thank you for reading my story, I know it was long but I just needed to show the full picture. Smile

Love Anna x

Parents

  • Hi Anna

    As someone else has said, at least you and your partner are in agreement that something isn't quite right and you are getting your little boy assessed.  He's not yet 2 but it does sound like you've noticed some of the typical traits and I think the earlier you know what you're dealing with the better.  

    I do often have to rein in my regret sometimes as I do think we "lost" a lot of time with our little boy who was diagnosed at 4 and a half but, I have to say, both my husband and I were in denial when a SALT first suggested our son was autistic shortly after his 3rd birthday.  He was saying very little but because my husband didn't speak clearly until he was 5, nobody shared my concern and I admit that as I knew nothing about autism it was solely the very limited speech that concerned me at that time.  Of course, now, in hindsight, the lack of interest in other children and inability to play with toys from the time of his regression together with various other typical ASD traits (teeth grinding, finger flicking in front of his eyes, hands over ears) were pretty much all present as well.  

    We were both in denial at the time of his diagnosis although I accepted it quicker than my husband.  We got a second opinion but by the time we actually went for that assessment, we had both pretty much accepted the diagnosis which was confirmed in the second opinion and this was in January this year, a month before our son turned 5.

    We had a nightmare with our son's last school as the headteacher didn't believe in inclusion so eventually indirectly excluded our son and I think the fighting we had to do with her wasted precious time when we could have been focussing on supporting our son.  However, our son is now in such a fantastic inclusive and supportive mainstream primary, it is such a relief to be able to work with education professionals who have the experience and knowledge of autism to work with us for the benefit of our son. We are currently on the NAS Early Bird Plus programme which has been excellent and has opened both of our eyes.  I am so glad my husband agreed to come on the programme because I know he has found it useful and I have seen him get to the point I am at in terms of finally coming to terms with and fully accepting the diagnosis.  

    It is so difficult when either your partner or your family or both are in denial.  I know a lady whose other half is still in denial but her mother in law is helping her learn more about autism and is supportive of everything she's trying to do.

    Yet despite how far we've come this year as parents of a (now completely) non verbal autistic 5 year old, my parents in law still come out with classics like, "once he starts talking he'll leave all his classmates standing" and about a year after his diagnosis which was 6 months after the second opinion, my mother in law said, as if this was the first anyone had mentioned autism in over 2 years, "who says he's autistic?".

    Follow your own instincts as you know your child best; leave the others to catch you up in their own time but if they never get there, it is harsh, but they are not going to provide you, your partner or your child with the support you need anyway so, frankly, their ignorance is only a hindrance.

    Best of luck with everything

Reply

  • Hi Anna

    As someone else has said, at least you and your partner are in agreement that something isn't quite right and you are getting your little boy assessed.  He's not yet 2 but it does sound like you've noticed some of the typical traits and I think the earlier you know what you're dealing with the better.  

    I do often have to rein in my regret sometimes as I do think we "lost" a lot of time with our little boy who was diagnosed at 4 and a half but, I have to say, both my husband and I were in denial when a SALT first suggested our son was autistic shortly after his 3rd birthday.  He was saying very little but because my husband didn't speak clearly until he was 5, nobody shared my concern and I admit that as I knew nothing about autism it was solely the very limited speech that concerned me at that time.  Of course, now, in hindsight, the lack of interest in other children and inability to play with toys from the time of his regression together with various other typical ASD traits (teeth grinding, finger flicking in front of his eyes, hands over ears) were pretty much all present as well.  

    We were both in denial at the time of his diagnosis although I accepted it quicker than my husband.  We got a second opinion but by the time we actually went for that assessment, we had both pretty much accepted the diagnosis which was confirmed in the second opinion and this was in January this year, a month before our son turned 5.

    We had a nightmare with our son's last school as the headteacher didn't believe in inclusion so eventually indirectly excluded our son and I think the fighting we had to do with her wasted precious time when we could have been focussing on supporting our son.  However, our son is now in such a fantastic inclusive and supportive mainstream primary, it is such a relief to be able to work with education professionals who have the experience and knowledge of autism to work with us for the benefit of our son. We are currently on the NAS Early Bird Plus programme which has been excellent and has opened both of our eyes.  I am so glad my husband agreed to come on the programme because I know he has found it useful and I have seen him get to the point I am at in terms of finally coming to terms with and fully accepting the diagnosis.  

    It is so difficult when either your partner or your family or both are in denial.  I know a lady whose other half is still in denial but her mother in law is helping her learn more about autism and is supportive of everything she's trying to do.

    Yet despite how far we've come this year as parents of a (now completely) non verbal autistic 5 year old, my parents in law still come out with classics like, "once he starts talking he'll leave all his classmates standing" and about a year after his diagnosis which was 6 months after the second opinion, my mother in law said, as if this was the first anyone had mentioned autism in over 2 years, "who says he's autistic?".

    Follow your own instincts as you know your child best; leave the others to catch you up in their own time but if they never get there, it is harsh, but they are not going to provide you, your partner or your child with the support you need anyway so, frankly, their ignorance is only a hindrance.

    Best of luck with everything

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