Here’s your child’s diagnosis… now off you go!

I wasn’t going to write anymore posts before Christmas, I still have so much to do, writing cards, buying the last few gifts, wrapping a mountain of presents!

But I just wanted to write this post as I get what I’m wanting to say flowing through my head all the time and it won’t go away until I’ve got it all written down!

At my local parents support group (that I help to run,) we had a meet-up on Thursday 7th December and the subject of ‘after diagnosis’ came up again. This is so relevant for us as a family currently, as our eldest daughter, Lou (5) was diagnosed with Autism Spectrum Disorder (ASD) only 4 weeks ago. We had a wonderful guest speaker from Autism West Midlands attend the group and we got into the discussion of what happens after our children are diagnosed, that there is non-existent after care for parents, whose child has just been diagnosed with something that they will carry for life, it doesn’t just disappear. We all mentioned that it is usually the procedure that the diagnosis is sent via paper, the child will then be discharged from the Autism diagnostic team and maybe even their paediatrician and then sent on their merry way. Lou hasn’t been discharged from seeing her Paediatrician, (who is one of the only professionals that has seen Lou’s full traits,) because she will be assessed for ADHD around February/March time, as children are usually assessed after their 6th birthday.

I knew I’d read something to this affect before my child was diagnosed and it was a fantastic post written by a fellow SEND blogger: Faithmummy:

https://faithmummy.wordpress.com/2017/01/22/when-your-child-is-diagnosed-with-autism-and-then-dumped/

I can 100% agree with what Miriam (Faithmummy) is saying in this post, especially as Lou was first given an IEP (Individual Education Plan) at the age of 3, then given a support package including interventions to support:

  • Gross motor skills (caller ‘Smart Moves,’) as she was diagnosed with Hypermobility at the age of 4.
  • ‘Relax Kids’ to support with self-calming and regulation methods which can also be carried on at home.
  • ‘Sensory Breaks’ given throughout the day in a specified sensory area with sensory toys and equipment to allow Lou to offload her sensory seeking needs. To avoid build ups and to prevent such a large ‘sensory overload’ when reaching home.
  • Emotions cards- recognising and naming emotions to help Lou to identify how she is feeling.

This support package was working for Lou, even without an official ASD diagnosis. What’s happened since she’s been diagnosed is that this support is now non-existent. It is more noticeable that as soon as Lou reaches me at the end of the day, as her ‘safe person,’ she immediately ‘offloads’ to me, often right next to a busy road, we’ve often missed the local bus to take us home and then it’s taken us over an hour to get home, what would normally be a 20 minute walk as Lou is so frustrated and overloaded from a day of ‘holding it all in.’

I’ve currently done 3 different parenting courses in the past 3 years, all suggesting different methods, but sadly none working for Lou, as she displays a high amount of PDA (Pathological Demand Avoidance,) although her diagnostic report states that she’s too young for this to be officially recognised as part of her ASD.

I still get comments regarding my parenting skills, even now Lou has an official diagnosis, I’m so exhausted with the fight to ensure that Lou gets the support she so desperately needs and deserves. My feelings on this are that it’s very much money dependent on SEND budget, and because Lou doesn’t cause trouble in class, she’s seen as ‘fine’ and just gets on with it. She would need to cause disruption in school and experience a meltdown/sensory overload in school to then get people to stop and recognise her struggles, but I don’t see why I should let it get to this point. The interventions she has been receiving are the sort that would benefit any class of children the same age. She needs support in terms of her comprehension and understanding, as in my own experience in school, I would nod and make it appear I was listening and understanding, but underneath I hadn’t got a clue what was being asked of me.

But what happens if girls ‘mask’ in school?

If girls on the autistic spectrum hide their ASD traits in school, it can cause long term effects in terms of their mental health, we have no positive experience with services such as CAMHS (Child and Adolescent Mental Health Service,) as Lou was referred to this service then they didn’t even observe her, and discharged her that same day! We were yet again given a whole load of ‘parenting strategies’ and sent on our way as we were receiving Family Support, which ironically, we no longer qualify for, yet our daughter’s needs are now much higher!

To me this simply doesn’t make sense! If you give yourself a ‘mask’ in school, this requires such a lot of mental effort and it leaves you mentally drained afterwards. I didn’t even realise I was masking my traits until I researched into my own difficulties, I didn’t even realise it was a ‘thing.’ So I had no awareness of why I was finding school so mentally exhausting.

You only have to look back into my medical records to see what has happened as a result of my masking in school and then into adulthood, several episodes of depression, one very bad (Psychotic Episode,) and regular reoccurrences of anxiety. I hardly spoke all throughout my whole school experience, I didn’t tell anyone I was struggling, I put my head down, made it appear like I understood and just got on with it, desperate to make myself seem ‘invisible’ and not drawn attention to.

This is what occurs when difficulties such as ASD aren’t picked up on and even if they are identified, when support is still not given. I find it so confusing as to why there are clear strengths and areas for improvement, and also recommendations on Lou’s diagnostic report, however none of these are being addressed. When we fought so hard for Lou’s diagnosis to be recognised and addressed via appropriate support. I was further knocked into the ground every time my parenting skills were mentioned.

There’s a question that’s hanging over me currently: “to EHCP or not to EHCP?!” Lots of fellow SEND parents have advised me to start the process myself. Lou I think is doing ok academically, her reading was taken back down to the first level, where she was at in her Reception class, when she had been moved up, there’s still a question over her reversing letters like ‘b’ and ‘d’ and words like ‘on’ and ‘no.’ She also didn’t meet her early years goal for writing at the end of Reception year, as she struggled to actually get her writing down on paper. It’s not only the academic side where Lou requires support, it is especially socially and emotionally where she struggles, and currently struggling with her self-confidence, which is worrying at not quite 6 years old. I have read that with an EHCP, it supports the child/young person until they are 25. Which I think would benefit a child like Lou, who may very well struggle more and more as the pressure of school mounts, e.g SATs and GCSEs.

For now, it’s December 12th 2017, I’m physically and mentally exhausted, I currently have no fight left in me. I need to enjoy the festive season with my family, then re- group and continue the fight for support for my girl, ‘Warrior Mum’ will have to return in January 2018!

Thanks for reading 🙂

Here are some more fantastic posts regarding ‘diagnosis’ from fellow bloggers:

http://itsatinkthing.com/special-needs/autism-diagnosis-harder/

https://someonesmum.co.uk/2017/06/16/i-will-not-let-broken-system-break-little-boy/

”Spectrum

Diagnosis Day

When my eldest daughter Lou was 18 months old, I first noticed that she had some sensory processing difficulties. She was a huge ‘Sensory Seeker,’ and loved the feel of a running tap on her hand and the pressure of holding her hand right under a running tap. She first started having tantrums of epic proportions, but as I worked with 2 and 3-year olds I hoped that it was just one of those age-related things and it was reinforced by other people that it was “normal behaviour for her age.” Deep down I knew there was something more, especially when the behavioural difficulties carried on and got worse through the ages of 3, 4 then 5. It was difficult for people to see the things we were dealing with at home as Lou ‘masked’ her difficulties at her pre-school setting, and as soon as I picked her up, or as soon as we reached our front door, exploded like a fizzy bottle that had been shaken all day.

After continually asking for help with Lou’s behaviours, which spiralled after my 2nd child, Moo, was born. I was sent on parenting courses, every time I mentioned her difficult behaviours my parenting was mentioned, especially as she appeared ‘fine’ in places away from me. People told me that I wasn’t firm enough with Lou, but being firmer just meant that Lou’s anger and frustration doubled. I started to research into Sensory Processing and I realised that this is a significant part of Autistic Spectrum Disorder (ASD,) I leant about ‘masking’ and children who offloaded to a special person, who they feel most comfortable with, I realised that I was Lou’s ‘safe person.’ I learnt about ‘sensory seeking’ and ‘sensory avoiding,’ and that some children can have both.

It was Lou’s health visitor that first said to me “I believe you” as she witnessed Lou’s behaviours on a visit to our house, and then made referrals to a Paediatrician and Occupational Therapist. Unfortunately, Lou was discharged from OT after only one appointment and 1 observation in school. I was hopeful for more strategies or support in helping with her sensory seeking behaviours and felt deflated after this. Lou’s hyperactivity and impulsive behaviours were witnessed by her paediatrician, who found that Lou had ‘Sensory Processing Difficulties, and Hypermobility (where the joints bend further than normal.)

After several appointments, it was agreed that Lou should be referred to the Umbrella Pathway Team (Worcestershire,) for an assessment to investigate if she is on the Autistic Spectrum. From the referral to the final diagnostic meeting (where members of the Umbrella Pathway team discussed whether they felt from the assessments and reports from Lou’s Paediatrician, OT and a member of the Complex Communication Needs (CCN) team, as well as discussing with Lou’s old school and current one, (where she has almost attended for a whole term now,) this process took approximately 9 months. I have heard that some parents have waited longer than this for a decision regarding their child, but after I heard that Lou’s diagnostic meeting would be in November 2017, I pretty much convinced myself that it would come back as an ‘inconclusive’ result. This was mainly down to my worries that Lou presented very differently to school than she does at home, and even though our family and friends have seen snippets of Lou’s behaviours and traits, the only ones who have witnessed her as 100% herself without any ‘masking,’ are myself and Lou’s father. The only hope I did hold onto was that the Autism specialist who completed the CCN assessment on Lou seemed to be very understanding of how girls on the autistic spectrum can present differently to boys.

As I started my 3rd parenting course to support with both of my children’s behaviours at home, I got a call from Lou’s Paediatrician, I was so nervous to answer the call, but the Paediatrician confirmed that Lou had been found to have a diagnosis of Autism Spectrum Disorder (ASD.) I felt an overwhelming sense of relief that I wasn’t making all of it up, as my low self-esteem lead me to believe, for all the times where I doubted myself and my parenting skills, there was a huge reason and I saw this from when was 18 months old. I also had mixed feelings of guilt as I am also going through an assessment of Autistic Spectrum Condition (ASC) myself and that I have a child with the same issues as I do, (also many different ones.) It hit me that this is a life-long and life-changing thing that will affect my child but also glad at the same time, that she has been diagnosed as a child and I do hope that she receives so much more support than I did through school, where I was labelled as ‘painfully shy,’ and because I just got on with things, teachers believed that I was ‘just getting on with it.’ I am pleased that my daughter is more vocal and outspoken as I was as a child, I hope that she has this ‘spark’ to speak out if she doesn’t understand something and not just sit in class pretending that she understands when deep down she really doesn’t. I hold onto the hope that it may have just changed since I attended school and my daughter will be included and feel expected and comfortable in her own skin.

I didn’t really ‘believe’ this ‘verbal diagnosis’ of ‘Autism Spectrum Disorder’ (ASD) until I set eyes on the actual summary report from the Worcestershire Umbrella Pathway team. This arrived the weekend of the 25th November 2017, it was then there, in black and white and then I actually said to myself: “It’s not me, it’s not my parenting, it never has been, and there’s a huge reason why. There is a part of me that wants to wave this report in front of certain faces, but I think the best thing I can do is just keep educating other people on how girls on the autistic spectrum present, and continue to help and offer advice to other parents who are going through the same thing.

One element of the diagnostic report states: “we acknowledge that she does not respond to direct demands, however, she is very young and there is insufficient evidence to specify that she has clear features of Demand Avoidance at this time.” Which I can understand. However, it is so frustrating for not only myself but other parents in the county of Worcestershire whose children display clear traits of Pathological Demand Avoidance (PDA) as part of the Autistic Spectrum. I have researched PDA for the last year and also use demand avoidant strategies at home, which have worked better than any other strategies we’ve been told to use. If I read any blog posts or articles about PDA I usually nod the whole way through, it just explains a lot. If PDA isn’t recognised in the county where we live, I have already decided that I would take Lou to see practitioners such as Dr Judy Eaton (consultant clinical Psychologist,) who specialises in ASD, ADHD and PDA, in a private practice.

As for the rest of the report, the ‘needs’ are double the amount of strengths, which is clear to see why extra support is required, there are also recommendations of what to do next, which I hope will be addressed at the ‘Team Around the Child’ meeting we have this week.

On 29th November 2017, Lou had an appointment with her paediatrician, we discussed that it is a shame that there are no specific ‘post diagnosis’ appointments to help parents after their child has been diagnosed with ASD, as this can be an extremely emotional and confusing time for parents. There are still questions regarding Lou’s hyperactivity and therefore it was decided to assess her for ADHD around March/April 2018, as she will be 6 in March ’18.

For now I’m trying not to think too far into the future, we are having to take each day as it comes. I want my daughter to celebrate who she is and never be afraid of being herself.

I will continue to find support in parents who also have children with additional needs, via online groups and also the parent’s support group I help to run, some parents have been through the same and their children are older, and some have only just begun the journey to diagnosis, I hope to support them in the best way I can.

www.spectrumgirls2.com

Facebook: https://www.facebook.com/spectrumgirlsourjourney/