Part 4 – Getting a diagnosis

In early 2008, my son was assessed by a multidisciplinary team which consisted of a consultant paediatrician, child psychologist, occupational therapist and speech and language therapist.  The assessment took place over a number of sessions and looked at communication, physical and handwriting skills, cognitive skills, educational skills and behaviour.  It also drew on information from school and from ourselves.  In all, it was a comprehensive, though tiring,  assessment particularly for our son, who I have to say, coped brilliantly.

After all this we were then invited to a summary meeting with the team and also the Special Educational Needs Coordinator (SENCO) from my son’s school who asked to come along.  I was quite taken aback by her wish to be involved, but was pleased that she was now taking an interest in our son so was happy to include her.  So there we were, me, husband, multidisciplinary team and SENCO, squashed into a smallish meeting room.  From the outset, however, I could sense a nervousness from the child psychologist and I kept wondering what on earth was the problem?  Its amazing how we remember such things isn’t it?  Anyway, after each practitioner discussed their findings, the Child Psychologist then summed up that our son had an autistic spectrum disorder (ASD) which might (note the word might) be described as Aspergers Syndrome. 

A shock

I was not expecting anything like this.  I was half expecting a diagnosis of ADHD and/or dyspraxia so to be told it was an autistic disorder was a shock, so much so that I just burst into tears.  It wasn’t just the shock of the diagnosis that made me upset but a sense of immediate relief that I was not to blame for my son’s behaviour.  I remember blurting through my sobs that I wasn’t to blame, with everybody looking at me rather strangely.  For a number of years I had had to tolerate suggestions from many people (including the teachers at the school) that my son’s behaviour was because I was a crap parent.  Now I had evidence that this wasn’t the case, that the root cause of my son’s difficulties was due to a developmental problem.  It was a very emotional, but liberating, moment.  Knowing straightaway that my son had an identifiable condition (even though I did not fully understand autism at that stage) meant that I felt comfortable in confiding the true extent of my son’s challenging behaviour.  Up to that point, I did not trust state services enough to be able to tell them the exact nature of his behaviours, mainly because I thought (perhaps irrationally, you might say) that social services would become involved.  I think it is probably true to say that my motherly confidence was at an all time low.
After further discussion, and a decision to refer us to CAMHS (Children and Adolescent Mental Health Services, part of the NHS), we left.  It was as we left that the child psychologist turned round to me and said “Be grateful, he can talk.”  I didn’t reply, my husband didn’t reply; we just looked at her and then walked away.

You may also be interested to read:

Part 3 – “I’m dumb” – the issue of self-esteem
Part 2 – on the road to a diagnosis
Part 1 – school, special educational needs and my son
2003 – first school year – difficulties emerge

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14 Responses to Part 4 – Getting a diagnosis

  1. Aspie in the family says:

    >Thank you for such a lovely comment Apples and Autobots. I think you are right about ASD parents being so in tune with their kids. It is a very unique experience and one that I struggle to explain to others; how I have to interpret my son's behaviour and physical appearance and not just what he says (when he is verbal) or how he says it.

  2. Apples and Autobots says:

    >You know, ASD parents are probably the most attentive, the most 'in tune' with their kids, and the most criticized. You're a great mom, and even though there will always be people who think they could do it better, none of them have walked in our shoes.

  3. Aspie in the family says:

    >@Jazzygal – hi there, nice to meet you. Definitely agree with you when you say "victims of their own success". I think my son eventually got to the point when 'masking his autism' led to mental health issues.

    @Kathleen – hello and thankyou for commenting. I agree there are great moments which I hope to write about more in my blog.

  4. kathleen says:

    >Oh-yes..diagnosis to me was a relief..finally I had a name..a crumb..something to steer us..It has been an adventure..sometimes hard-most times wonderful..I'm with jazzygal on this…tune out the nay sayers..:)

  5. jazzygal says:

    >Hi there, we've had a similar journey too. My son is doing fantastic now. The thing is, the "better" they become, the more high-functioning the more these comments increase….sigh! They then become, as I call it, victims of their own success. Yet, it is wonderful to see and celebrate every success along the way… just tune out the unhelpful comments!

    Good to find you here :-)

    xx Jazzy

  6. Steph says:

    >Hi, this all sounds so much like our daughter, and how I fear it will be for her when she starts reception in September. The main difference of course is that we got her diagnosis age 2 and 3/4… but I agree some people still don't really see her autism, and they obviously think it's my parenting. It's soul destoying, but you can't be looking over your shoulder the whole time so you do have to develop a thick skin. Can't believe the comment about being lucky he can speak… I have said before that in a weird way I'm almost glad that my daughter's speech is not totally clear, or else I don't think we would have had her diagnosed til much later either. Am following your blog, thanks for sharing, hope it helps us all x

  7. Aspie in the family says:

    >Hi Looking for Blue Sky – I still get a bit of this too; in fact some family members still think my son is not properly autistic.

  8. Looking for Blue Sky says:

    >I also felt a certain amount of relief that my son's behaviour was not my fault, but some friends and family still think a good smack would help *sighs*

  9. Aspie in the family says:

    >Hi Jean. Know what you mean about the "punched" feeling; I wasn't expecting to react as I did. It took quite a long time to adjust to it. Great to hear how your son has done so well since then. x

  10. Jean says:

    >We waited 15 months for my son's diagnosis, and even though we expected ASD it was like being punched to actually hear it. I had an overwhelming sense of "no going back".
    That was nearly 4 years ago now. Can't believe it. He's come such a long way in that time. XXX

  11. Aspie in the family says:

    >Nice to hear from you SuperLittleMen and thankyou for your lovely comments. Going through these experiences, I was particularly shocked at how parents were treated. So I thought I would write about it, just to get it out of my system, and if it helped anyone, then that's a bonus. I do feel I'm ranting a lot though, but soon I will have something good to say. x

  12. SuperLittleMen says:

    >I know exactly what you mean about people thinking you are the problem and there is nothing wrong with your son that a bit of discipline wouldnt sort out – gurrrh.. You are making me think I should write about our experience as there are so many similarities and maybe someone will read it who will benefit from our experiences. Enjoying reading your posts, even if they may be hard for you to write x

  13. Aspie in the family says:

    >Thank you Lora. I look forward to following your blog too. Your picture of Elmo particularly made me smile; it reminded me of how soft toys are a big feature in our house too.

  14. Lora says:

    >The diagnosis is really hard and a big shock too. I am glad that you stopped by my blog (My Beautiful Child Griffin & Autism), I left a comment there for you after the comment that you left about the Big Bird. Now I have a new blog to follow and to put on my blogroll. Thanks for following my blog and commenting too!

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