Getting An Autism Diagnosis – Our Story

When our oldest daughter was born being our first child we had no benchmark to work from, all her firsts were just wonderful to us and we were unaware she had been born with autism. Perhaps it was masked by the fact she had a few other health issues such as profound deafness, and coordination issues. Her severe lack of hearing (although passing three independent hearing tests with flying colours) did get addressed medically by having an operation to insert grommets on two occasions and when she was eight she was diagnosed with dyspraxia.

Getting an autism diagnosis: Our story. 'Autism, Where direction is more important than speed' Our journey as a family in the diagnosis of our daughter's ASD/Autism. Read more at My Family Ties Blog.

Once she was mixing with kids her own age in nursery and kindergarten it was plain to us that while she enjoyed going and participating in all the activities, she was different.  Her social skills were not as fluent and natural as her peers and making friends wasn’t important to her at all. She would rather be getting messy with paints and playdough than being involved with what the educators call ‘traditional play’.

Did this worry us?

Not really as we thought she was just exploring who she was, and who were we to hamper her development? Yes we planned lots of playdates with other kids, spoke to the teachers at nursery and kindergarten but her true self was very un-responsive to our gentle nudges to be more social. We actually wondered if she was simply a child who was a bit of a loner, she loved to play for hours with sensory arts and crafts and we embraced this trait at home and at nursery and kindergarten. She communicated well and made plenty of eye contact with everyone and although she was a late developer with her speech we had put it down to her hearing impairment.

One day at kindergarten her teacher gently suggested to us that she felt our daughter was displaying autistic tendencies. This really knocked me for six as I had never considered she had this condition and back then I was unprepared and unversed about autism. I can remember discussing this with my partner for hours after this bombshell, perhaps the teacher didn’t know just how much this had affected us but from then on it was all we could focus on. We felt we had been neglectful parents who should have spotted she had autism, and in the days and weeks that passed we poured over any information we could find about autism and autism parenting.

This was all before her autism diagnosis, as she was actually diagnosed by CAMHS (Child and Adolescent Mental Services) when she was eleven – seven years later.

We took her to our local GP for guidance as soon as we thought she may have autism and the GP felt our assumptions were unfounded, but referred us on for our own peace of mind. She was seen by a paediatrician who after a lengthy consultation concluded she had mild ADHD,  poor concentration and at times had issues surrounding sensory overload. No mention of autism at all and even advised us not to pursue this condition at all. We left feeling more confused than when we went in. Back then I put all my faith into doctors and didn’t question their methods or diagnoses – very different to now when I question and research everything especially when it comes to protecting our daughter.

Nothing changed with our daughter and now it seemed all her characteristics and ‘stim’s’ were more apparent to us than they had ever been. How could we have missed this? It was so clear that she was on the spectrum and yet it had taken a new teacher at kindergarten to see it before us. We felt terrible.

Just a few weeks later we regrouped and decided we should pay privately for an independent assessment with a clinical child psychologist and paediatrician. This would help us to help our daughter, we wanted to be able to understand her more deeply and help her in the best way we could. After the consultations however the paediatrician felt she had mild ADHD, some coordination issues poor attention, much the same as the first consultant. The clinical psychologist highlighted her outstanding observational skills, her maturity, tendency to flap, sensory issues, possible ADHD and some anxiety toward social skills. No definitive diagnosis and what surprised us was we left feeling downhearted as we almost wanted that label of autism so we could move forward and help her.

What followed was many trips to the GP and lots of advice from Autism help organisations and although she had no diagnosis we were certain she had autism. School was always hard for our daughter and bullies surfaced throughout her education, all we could do is keep communication lines open at her school and talk it through with her whenever she needed to. We are lucky she talks so freely and let’s us know when she feels anxiety or is suffering from bullying. Her grades have never been high and teachers with understanding have been few and far between. Her idiosyncrasies which we found endearing around her schoolmates and teachers became very uncool and noticeable and these differences invited the classic school bully to target her. She has moved school and on multiple occasions we have had to visit her school to address the latest round of bullying she has endured.

She is now sixteen and at eleven she was finally diagnosed by CAMHS and this has helped her more than anything in understanding what autism means and how she fits into the world with the condition. Autism is so misunderstood and each individual who is diagnosed with Autistic Spectrum Disorder will present differently. Almost all will have a collection of disorders attached to ASD – yes this makes them different but this makes them individual. That’s what I say to my daughter, having ASD doesn’t single you out – it makes you you.

In fact when she got the diagnosis of ASD they said she was displaying more symptoms of Asperger’s Syndrome, which we had suspected for years. But the blanket diagnosis of ASD is more commonly used now instead of AS.

Has her ASD diagnosis helped?

As a whole yes it has. Not just for her to have more self awareness of her ASD but also for us to understand her and help her to find her way in life. My advice for any parents out there seeking help and an assessment for autism, take it into your own hands if you find doors are closing for you. Keep asking, talking to professionals, talking to other ASD parents, join a group, social network and keep on going until you find what you need. This may seem overly dramatic but it took us seven years of trips to medical professionals to find out that yes she does have autism – and by the way it’s really noticeable. 

I kept a diary about our daughter and I wrote down pretty much everything she did for abut six months. This helped tremendously when we decided to go back to the GP for a referral to CAHMS to have an assessment for autism, as did a chronological timeline of her life and our family life. During the seven year gap we had a lot of family change, we welcomed her little sister to the family and spent three years living overseas too, even though we had lots of change we still forged forward and read and researched about autism and found new ways to help and educate her (and ourselves) about ASD. It wasn’t until just before her first year of secondary school that we finally got the diagnosis. 

If you are going through a similar experience my advice would be follow your instinct and if you feel your child needs to be assessed, keep a record/diary of their behaviour and any information which you feel may be relevant to share with the professionals. There is so much information and help on the web and many organisations who can help you, and I have found it very helpful to always let our daughter know as much information as we do.

Never underestimate the power of perseverance and don’t be afraid of the diagnosis either, it’s a point to work forward from and learn more about your precious child. Talking it through with your child will not only help you to understand but help you to develop a really loving bond too, we are so close to our daughter and I believe that being totally transparent about her autism has had a hand in that closeness.

Getting a diagnosis of autism is just the beginning of a new journey and for our family it has been a learning curve and continues daily to bring new insights and information. Our little girl is now a young lady and is more precious to us that ever, she is a happy fun teenager who loves to read and learn, sing and play music. Her diagnosis of autism has helped her learn so much about herself and has also lead her to a wonderful local disability youth group, where she has met other teenagers with ASD and AS with whom she has formed great friendships with.  With her GCSE’s looming she is going through another hurdle in her young life and we couldn’t be prouder of her. 

Getting an autism diagnosis: Our story. 'Autism, Where direction is more important than speed' Our journey as a family in the diagnosis of our daughter's ASD/Autism. Read more at My Family Ties Blog.
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  1. March 14, 2016 / 11:27 pm

    I know from my work that it's really difficult to get an ASD diagnosis for a lot of children who are not high on the spectrum, but it's worth being persistent for the future. There's still many think I many be ASD, but at my age, I think I'd just get laughed at if I mentioned it!

    • March 15, 2016 / 10:23 am

      It's a really complex and slow process to get a diagnosis and since we have gone through this journey I have met several adults who have realised they are on the spectrum. What I can say is it's never too late to see your GP about it, and I'm sure they wouldn't laugh at the suggestion but want to help you. Best of luck if you do go x

  2. March 15, 2016 / 1:51 pm

    Gosh what a long process
    Sounds vertical complex
    My cousin has aspergers and it was only with persistence and repeated trips to Dr's etc by his parents that they actually got a diagnosis -with correct help he now leads a full life
    Thankyou for your story

    • March 15, 2016 / 5:10 pm

      It certainly takes a lot of time and patience Margaret, but it was worth it in the end as she has found the support she needs and made some lovely friends at her youth group. x

  3. March 15, 2016 / 3:04 pm

    I'm so sorry your daughter had to go through so much bullying while growing up, all for just being herself. It sounds like a very positive direction things have taken now that she's making friends with other youth's like herself. Thank you for sharing her story, it really helps to understand things surrounding autism a bit more.

    • March 15, 2016 / 5:14 pm

      Thank you for your comment Jennifer, it has been a tough ride for her and I am so proud of how she has overcome the bullies in a very mature and positive way. It's so lovely to see her making friends with young people her own age who understand where she is coming from too x

  4. March 23, 2016 / 2:27 pm

    We have been through it with my son, who is now 11 and doing well at mainstream school – there are so many things to think about and the whole process seems to take forever, there are many of us out there going through the same thing – one of the most important things is to remember that autism doesn't take away the fact that your child is an individual, unique amazing person, although sometimes it feels like that when they are just a name on one of a bundle of reports – good luck on your journey xx

    • March 24, 2016 / 9:46 am

      I think if you can get your child into a school which will support them with or without a diagnosis that is the first step. The process seems never ending sometimes and it's very frustrating for them and for you as a parent. I totally agree with you about autism not defining them full stop, we are blessed with our daughter and thankful every day she is a unique, lovely, kind young lady and her insight to life wouldn't be the same without her ASD.

      My thoughts are that if we as parents aren't there to champion and battle on their behalf they have little or no voice, and that's why I push and push for her to be supported in education, she and every child who is on the spectrum deserve to have that support. It's not easy but slowly we are getting there! Great to hear that your son is doing well in school, good (understanding) teachers are worth their weight in gold! xx

  5. March 25, 2016 / 8:32 am

    The conditions are all differently named and it's all very confusing!

  6. March 28, 2016 / 5:27 pm

    I know from my experience in schools that it's really long-winded to get an official diagnosis, but once it's in place you can look forward to a brighter future because the support is better within the education system.

  7. Angela weir
    April 23, 2016 / 8:23 am

    My cousin went through this and it was a long process but now he's getting the right help to give him the best possible future

  8. June 30, 2016 / 8:12 am

    Very interesting, im shocked how long the process is, it must be such a difficult time for everyone in this situation

  9. Kerry Kilmister
    September 18, 2016 / 8:22 pm

    On Tuesday we are getting my 12 year old son’s results from his ADOS test. WE are so nervous. x

    • Caroline
      September 19, 2016 / 9:58 am

      It’s an anxious time for the whole family and I sympathise, all the best for Tuesday Kerry x

  10. Kayleigh White
    September 19, 2016 / 7:08 pm

    My sister has had to wait over 5 YEARS for a diagnosis – her 7 year old boy was just 2 when they noticed some ‘differences’. Now, that he has been diagnosed, we know ho to go on. The school however is a nightmare and won’t adapt for him and refuse to say he is autistic!

    • Caroline
      September 20, 2016 / 11:47 am

      It’s so hard Kayleigh and once you have a diagnosis it does help somewhat as the schools etc can provide the additional support, however some schools as we have found will not allow any additional support even if you have a professional Autism diagnosis. My advise would be (as we have done with our daughter) make an appointment with the head of SEN at the school, contact the local council for Autism Support to attend or to intervene on behalf of you and don’t stop until you have your concerns heard and. Also it is well worth contacting The National Autistic Society who I found to be so helpful with our daughters concerns for help and advice. x

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