Snakes and ladders. Getting an autism diagnosis: a parents view.

How we got an autism diagnosis for our son

Writing this now seems a bit hazy as it seems so many moons ago as so much has happened since getting our sons diagnosis.

I have written a lot recently about what happened post diagnosis, after one battle there always seemed to be another one to kick you up the bum!

So here goes.

Back in January 2016 we decided to push for an autism diagnosis, it seemed the right thing to do to receive the extra help and support that we needed for our son to remove the label he had of just being the naughty kid.

Our first steps were to engage with school, we asked them their thoughts on obtaining a diagnosis and then possibly push for some reports from school (evidence) to be able to show CAMHS (Child and Adolescent Mental Health Services) if we got that far.

Our first port of call was a  written letter from school to my doctors asking the doctor if they would be willing to formally assess my son for Autism. School mentioned in the letter how my son was having huge issues in his personal and social interactions and how he would need further support going forward.

In February 2016 we received a letter from Mindmate, an organisation that acts as the liaison point between parents and CAMHS  (they seemed to me like  a ‘filter’ for referrals).

Luckily, we were told that our referral was proceeding and were told that CAMHS would contact me with a letter within 1-2 weeks.

Great! I thought, we were shortly going to receive the assessment and hopefully the diagnosis that we sought.

From this point forward, I felt like I was on a game of snakes and ladders, I was either going to go up the ladder onto the next stage or going back down due to some road block.

I started checking my letterbox every morning and eventually it arrived!

Excitedly, I ripped the envelope open and my face fell.  The letter informed me that I am on another waiting list, that waiting times can go up and down depending on demand. Last month 90% of children attending a first consultation clinic appointment were seen within 33 weeks. I felt I was now slowly going down the snake and back at the start waiting for our turn. Thirty three weeks was a long wait but we had to hang in there!

The assessment process 

Eventually, we received a letter detailing the assessment process and the date for the first phase of this.

The assessment process offers families three appointments, a parental interview, child assessment and school liaison.

Information is gathered by semi-structured interview following an internationally recognised format (The Autism Diagnostic Observation Schedule or ADOS)

All information obtained is analysed using the The World Health Organisation’s diagnostic criteria for Autism Spectrum Disorder (ICD10)

This states that a child must have significant difficulties across three areas known as ‘The Triad of Impairments’ associated with Autism

  • Reciprocal social interaction
  • Language and communication
  • Stereotyped interests and behaviours

Significant difficulties must be observed in all 3 areas and difficulties must be present in home and school.

The final assessment is for all information to be collated including reports from speech and language and external agencies.

All of the above is the process that was followed. Each appointment was spread over a number of months that seemed to feel never ending but we were still going up that ladder and making progress.

At this point the dice was not rolling,  we were stuck in a period of  time  just waiting, we asked school  for additional evidence from the Educational Psychologist. We were told to gain access to the Ed Psyc the school had to go through a cluster bidding programme to gain access to the service. Our school managed to get through and over the next few weeks our son would have a visit.

So doctors, CAMHS, the Ed Psych … I began to wonder what my son was actually thinking at this point. He was very switched on even at 7 years old but was he wondering why he had to see all these people? How could I explain? Things were not going well at school, I could not damage his self-esteem any further. I needed to explain in a way that was not going to make him feel like there was something wrong. All I could think of telling him was that he had an amazing clever brain that is so unique!

I remember the conversation well. We were driving in the car and out of the blue I mentioned that I was very impressed with him … he asked me why? I explained that the teachers at school do not understand the way his brain worked, we all think he has a genius brain and the doctors need to do a few tests to see if he had a special ability. Even now to this day I always use the word ability!

March 2016 came we moved a little further up the ladder and received a lengthy report from the educational psychology team. It outlined a number of big concerns

  • Fine motor skills and hadwritting
  • Sensory processing needs
  • Impulse control
  • Taking whole comments personally
  • Social learning
  • Black and white rigid thinking

Further reports were done from the SALT team (Speech and Language Therapist) the summary was pretty much similar showing a struggle in social communication and pragmatics of language. These were all passed across to CAMHS to complete assessment.

The last appointment I will never forget, we were asked to bring our son to clinic and he would be asked to do some simple puzzles. The feeling of nerves were still sat in my stomach hoping that my son would behave as he does ‘normally’. I did question, “What if he seems normal to the psychologists and we end up down the biggest snake on the board and right to the beginning?

As we entered the building there was another little boy waiting with his father. The boy was chatting away about Minecraft and what he was creating, instantly there was a spark of a connection between my boy and the other boy due to go in. I whispered to my husband if our son does not get this diagnosis then the other boy won’t! They were both the same and obviously both on the spectrum. We did not even have to be a professional to see this … it was clear, so obvious!

As my son went in the room I waited patiently outside for around an hour. I paced back and forth and hoping that they could see the struggles that I could see. I prayed that we wouldn’t get knocked back after coming this far.

The door opened and the two psychologists allowed me in to collect him, the lady looked at my son and just as we had told him all through this process was the exact same sentence that came out of her mouth too .. “Just remember that you have a very clever special brain and do not let anyone tell you any different!” She smiled at us and off we went.

All 3 stages were complete with CAMHS and by the 4th July 2017 we received a diagnosis of Aspergers syndrome.

ICD10 Criteria defines that for a diagnosis of aspergers a child must have normal speech and language development before the age of 3 years. If there have been language difficulties during this time a diagnosis of ASD (Autism Spectrum Disorder) is given.

My advice is to not give up.

You will own a fair few pairs of boxing gloves on your journey but keep plowing through. Be prepared for people to tell you that “You can’t do this ..” or “You won’t get that”.

They’re wrong.

Some people think that a diagnosis is just  a label and do not see the point. To us it was very clear cut that we needed a diagnosis for our child to be simply understood and accepted.

To give our son the best start in life is to be understood and to be able to gain more understanding on his journey, we learn more about our son every day and adapt around his needs.

He is on his second day at a new specialist school for children with social, emotional and mental health challenges. Without his diagnosis I know we would not of got this far.

I wish you all the luck if you are embarking on this journey at the start of the board game.

 

 

2018-09-10T16:58:38+00:00

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