Part 5 – Adjusting to a diagnosis

After being told that my son was autistic, I felt an immediate sense of relief knowing that my son had an identifiable disorder and that I was no longer to blame for his behaviour. However, for a number of months afterwards I found it difficult to talk about it, even to family and close friends. I guess it was my way of coming to terms with the news that my son had a lifelong disorder that was more complex than I had anticipated. My husband on the other hand was angry; he felt abandoned because all we got in terms of help was a detailed report, a folder of information and a referral to Mental Health Services. Except for this, no other support was offerred. We also had the added pressure as to whether to tell our son or not. The child psychologist suggested that it may not be a good idea to tell our son and I, for one, initially agreed with her. I did not think my son was ready for this and neither was I sure he would understand it. We also needed time to come to terms with his diagnosis first and to try and understand more about the autistic spectrum.
As a result, I managed to find support from the National Autistic Society who run various Help programmes for parents of autistic children. I attended a one-day course for parents/carers of children newly diagnosed which was designed to give information on autistic spectrum disorders and other services and benefits. I came away with some good information and tips which helped me to start to develop my understanding of the autistic spectrum and what it meant for our son. I also started to read a variety of books from professionals, carers and autistic people themselves.  Whilst the professional reads offered clear and useful explanation of the autistic spectrum, it was the books written by autistic people and their families that provided me with the greatest insight into my son’s perspective.
After a while I started to realise that getting a diagnosis was a positive thing for we now knew what was wrong with our son and could find ways of helping him.  For the first time in a very long time I felt that the future was a lot brighter.
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5 Responses to Part 5 – Adjusting to a diagnosis

  1. Aspie in the family says:

    >Hello Karen – thank you for commenting so positively; its really good to hear from readers. Your pack of information sounds really good and hopefully will help others who read this blog – thank you for sharing.

  2. Karen says:

    >Just found your blog today and I think it's great. Diagnosis is always a mixed bag. My son was diagnosed 5 and a half years ago when he was 2 as he is severely autistic, and he is still non verbal etc etc and even now I sometimes find it hard to talk about so I have a pack of information made up that I lend out to help explain Autism. In our pack we have some NAS literature, two story books 'Ian's Walk' and 'My Brother is Autistic', the DVD 'A is for Autism', the NAS card 'this young person has Autism…' and I have put my son's name and photo on the back then laminated them to personalise them and some other bits.

  3. SuperLittleMen says:

    >Sometimes just nhaving a proper name for something helps and like you say begin able to read and do something positive, which is right for them is the best thing. I felt nothing but relief when we got the ADHD diagnosis, it was no surprise but we had had 3 years of being very frustrated that no-one else would recognise it. Now we just have to complete the aspergers one!

  4. Aspie in the family says:

    >Hello Fiona – thank you for such a lovely comment.

  5. Fiona says:

    >J was 2 when he received his diagnosis. As you know he's on the lower end of the spectrum so it was all fairly straight forward and we already knew a little about the spectrum as Hubby's nephew has Aspergers. Nothing was a great shock really. Except when you finally sit there face to face with a paediatrician/psychologist or whoever and hear those words…….
    Well, I began to shake. I felt a mixture of relief, confirmation of what we already knew and sadness. Looking at my beautiful kick-ass little 9 yr old I'm smiling. Thank you for the post. I hope someone going through diagnosis for their child right now reads it, it will really help them to know they aren't alone. xxx

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