Autism Assessment & Diagnosis - A Parent Voice

This month the Autism Unravelled Blog has a take-over guest, a parent who has been through the autism diagnostic process twice with her girl and boy twins. We approached Randa, who is the mother of 3.5 year old twins as we felt that she has a unique story to tell which would be helpful for those families who are yet to have an autism diagnostic assessment or who are still processing and making sense of their diagnosis as a family. 

Randa shares her experiences of top tips and useful resources for families awaiting diagnosis. She describes her own experiences of two diagnostic assessments for her twins, and her decision to undertake a private assessment for her son. Randa is a working mum who juggles looking after her twins by day and fits in her work around caring for her family. The juggle is real and Randa shares her parent lockdown survival guide. We would like to take the opportunity to thank Randa for sharing her experience of the journey so far. Randa’s parent voice provides beautifully honest, relatable insights and we hope it gives you some understanding of her journey to date.

Question: What was your experience of going through a diagnostic assessment with your twins, I know your daughter was diagnosed by NHS clinicians and your son privately. Can you tell us how that felt from your point of view?

Randa’s Perspective

I had a strong inkling that my daughter had autism when she was around eighteen months old, and with my son a few months later. They were born prematurely, six weeks early, and until this point, I had put their developmental delays down to this. However, my 12 years as a teacher in my previous career helped me to identify some of the traits I saw in children with autism that I had previously taught – the difficulty with transitions, the obsession with order and routine, the disinterest in peers, the sensory-seeking, the sensory overload, the inconsistent eye contact, the sometimes destructive tendencies, the delayed and limited speech and the sensitivity to changes in their environments. It was a slow and gradual realisation, but it meant that it wasn't a shock to receive the diagnoses.

Both twins displayed their traits very differently, but my worries were confirmed by the nurse who conducted their 27-month review. Horrified by my son’s anarchic and wilful disregard for convention (arguably a familial trait, and one that I am covertly proud of), and my daughter's enjoyment of eating the beads rather than lacing them on a string, as instructed, the nurse noted, “they’re very sensory, aren’t they?” I knew immediately what she was tactfully implying.

To my surprise, both twins moved along the NHS system quite quickly, despite having heard that the waiting times can be protracted. Their 27-month review took place in December, by the following January they were reviewed by NHS speech therapists, and by March they were seen by a paediatrician (not for diagnosis, for review). The paediatrician went through a checklist of generic questions regarding the twins’ development (both were seen separately), she then conducted some play-based activities with them. At the end of my daughter’s review, the doctor confirmed that she believed that she had autism and would place her on the “pathway” for diagnosis. I asked her whether she had any previous cases of patients who she believed to be autistic but in fact were not, to which she answered a firm “no”. 

The paediatrician was clinical, and delivered her findings in a very matter-of-fact way. I hoped that she would follow with some points of reassurance, but we were swiftly told that my daughter would be placed on the pathway and would be seen for review by other professionals, but that the wait for actual diagnosis would be lengthy.

A week later, my son was reviewed by the same paediatrician. My son is very people-oriented, he lavishes in attention, is very chatty and has been described by many as “charming”. For these reasons, people are often in disbelief that he has autism. The paediatrician was of the same assumption, and discharged him concluding that he was “just a boy with a lot of energy who gets easily frustrated.”

It was only six months later, when the two speech therapists in his group speech therapy sessions asked to speak to me at the end to relay their concerns that my son had autism. Their reasoning was that he repeated almost everything that they were saying. I naively believed that this was his way of being engaged and attentive to their activities. I now know this to be called “echolalia” and that it is quite a clear indicator of autism. 

My son was then placed on the pathway as well, however, his diagnosis would take place at least eight months after his sister’s, who was referred much sooner, because the initial paediatrician who reviewed him was incorrect. This presented a huge complicating factor, in that we wanted them both to have their diagnoses at a similar time so as to move them to a specialist school, if necessary, simultaneously.

My daughter’s NHS diagnosis took place almost exactly a year after her 27-month review. During the year-long period, she had multiple speech therapy sessions and was reviewed by an occupational therapist, so the time spent waiting did not seem “lost”. The clinicians employed the Autism Diagnostic Observation Schedule (ADOS) testing, whereby the paediatrician asked us a checklist of questions regarding her development etc, while another clinician conducted play-based activities with her.

This process lasted under an hour, the clinicians then had a discussion amongst themselves before inviting us back in to give us their verdict. At this stage, the diagnosis did not come as a shock, and was mainly a formality so that we could get my daughter the necessary support that she needed and deserved. The paediatrician, Dr Najib Yusuf, was a very kind man, who did provide us with reassurances and an abundance of leaflets and information about support services available. He had a fantastic approach in dealing with us in a very human manner, understanding that the news can be daunting to receive.

I have been very impressed by the level of care given to us by the NHS. Speech therapists are some of the loveliest people I have met, and the quality of care has been generally outstanding, especially considering the strangulating effect of budget cuts and underfunding the NHS have endured under the current political regime administration.

Question: Your boy twin was diagnosed by Autism Unravelled, what was the experience like for you to follow a private route?

Randa’s Perspective

It was following my daughter’s diagnosis that I decided to look into obtaining a private diagnosis for my son, so that he wouldn’t have to wait up to a year longer for his NHS diagnosis. I consulted Google and read through posts online, and came across Autism Unravelled. After speaking to Louise on the phone, we booked my son in for a diagnosis to take place in our home, one month after his sister’s NHS diagnosis.

Louise (speech and language therapist) and Rebecca (clinical psychologist) were warm, reassuring and, most importantly, they understood my son instantly. They are also so familiar with the anxieties that parents can have in this position, and really helped to demystify the situation for us, with their clear guidance and advice. It is easy to feel like you are drowning when you first find out that your child(ren) has/have autism – in fear, in panic and in an overwhelm of available information. 

My knee jerk reaction was to Google every possible intervention and support that money could buy, in an attempt to “remedy” the situation. Did we need an ABA therapist, a music therapist, an occupational therapist, a speech therapist? 

Louise and Rebecca really helped to clarify our situation for us, explaining our son’s needs, but most importantly, also highlighting his strengths. This was new for us, as I felt that until this point all I could distil from previous appointments was, “your child will have difficulties with x, y and z ……” They helped to alleviate our worries, and transform them into optimism. 

Rebecca sat with my husband and I to talk us through the assessment questions for parents, which seemed much more specific and detailed than the previous assessment we had for our daughter. Meanwhile, Louise sat with my son in another room to conduct the play-based activities with him and assess his speech. He had not yet met Louise prior to this, and I feared he wouldn’t be compliant, but Louise obviously has the magic touch because he willingly participated without a fuss.

The whole process was much less daunting than our previous experience, especially having taken place in our home. Louise and Rebecca delivered their result, not in an automated and impersonal way, but they handled us with “kid gloves”, which is exactly what I needed. I wanted to be spoken to like I was a parent filled with fear and apprehension over my children’s futures and I wanted someone to help appease that, which they did. I felt like we had met the “right” people to help us, to give us counsel and to steer us in the right direction. Once we received the diagnosis report from Louise and Rebecca, we were booked in for an hour-long call to discuss any further questions or concerns that we had.

I have since been in contact with Louise and Rebecca for several reasons, and they are my first port of call when I have any questions regarding difficult decisions we have to make on behalf of the twins. They have been marvellous in advising us on the statutory assessment and educational health care plan (EHCP) processes, and also the very heavy decision about which type of school would be best for our twins – mainstream or specialist.

I can also, without hesitation, recommend the Autism Unravelled team to any parents in a similar situation. I am lucky that we found them in the early stages of our autism journey and I know that they will continue to be a part of our process in the future.

We are now reimagining our futures, and although there are still lingering question marks, I feel positive. I am under no illusion that my "real" children are hiding underneath an invisible veil of autism, and that with time this will be shed. This is the real them. They have quirky, captivating and endearing personalities, their uniqueness is what I admire most about them, and it is our job as parents to embrace that and to help remove their barriers and struggles.

Question: Was your assessment report from Autism Unravelled accepted by your local authority?

Randa’s Perspective

I have not had any difficulties with this as Autism Unravelled use the commonly employed ADOS system for diagnosis, as does the NHS. According to SENDIASS, private reports will be given the same consideration as reports commissioned by the school or local authority.

Question: What advice would you give to families who are currently awaiting an autism diagnosis?

Randa’s Perspective

There is a lot that you can be doing while you wait for your child’s diagnosis. It is not “lost” time. Autism Unravelled can advise on what kind of intervention and support may be right for your child, whether it may be seeing a speech therapist or occupational therapist etc. We had several music therapy sessions while we waited for my daughter’s diagnosis, as singing is her passion, which really helped her interaction and attention-skills, and was a real pleasure to see her engage in something with such enjoyment.

Look into acquiring inclusion funding through your child’s educational institution. While we waited for our twins’ diagnoses, their school was able to secure inclusion funding to obtain an additional teaching assistant to work with them, which has had an immense and beneficial impact.

I quickly tried to educate myself as much as possible about autism and how I could help my children myself. Louise and Rebecca recommended a book which I have now passed onto other family members, as well as to other parents in a similar boat – Autism: How to raise a happy Autistic child, by Jessie Hewitson. It is written by a mother of an autistic son, in a very relatable, readable and even humorous way, without the scientific jargon or the doom and gloom I encountered in some other books. I also enjoyed reading books by Temple Grandin, a professor, prominent author and speaker on autism and animal behaviour, and on the spectrum herself.

I also got in touch with Skylarks charity, based in Twickenham, who are an SEN charity offering a range of free activities and classes for children and their siblings, as well as support for parents and carers. I would really recommend looking into local charities and support networks available to you, they really helped me not to feel isolated by the situation. The National Autistic Society is also an excellent resource, and their website is a great place to start. Attending my local children’s centre’s SEN playgroup also helped to be able to speak to other parents of children with additional needs, and to hear their experiences of the road ahead. By making connections, you can really help lift that feeling of isolation and doubt about what to do next. 

I would also like to emphasise and stress that your child is no different after diagnosis than the child you knew before. During my time as a teacher, I often wondered why some parents refused diagnosis, as their dislike for “labels” was depriving their child of the support and intervention that they deserved to have access to. A friend and former colleague, who is a SENCo, once told me, “if you don’t get your child a diagnosis, they will still have a label, and it might be ‘the naughty kid’.” If ever there was a valid argument for diagnosis, this was certainly one.

A diagnosis merely means that you can now be entitled to assistance for your child. It is crucial to unlocking support for your child – whether that be in the form of a teaching assistant at school, or speech therapy and occupational therapy, and potentially more. A positive diagnosis of autism is not a life sentence, it is only the start of your new collective journey.

In light of the current situation where we have all been faced with lockdown we asked Randa if she could share any of her experiences having had her 3 year old twins at home for the last 3 months, we asked her survival top tips in terms of how best to weather the storm that is Covid19. 

My lockdown survival tips:

Randa said, I did not handle lockdown with grace, I complained a lot, and it was truly more exhausting than the new-born phase with twins, especially due to the separation from my mother who helped provide her assistance, wisdom and childcare since day one, and juggling work around the twins. I was also very daunted by the loss of contact with the two well-loved teaching assistants at my twin’s nursery, whose input and support we have depended on and valued greatly. No longer having my “village” was the most unsettling aspect of lockdown.

I feel fraudulent offering any advice on lockdown survival, as I barely emerged from it with my wits intact, however, although nothing revolutionary, this is what worked for us:

1. Day one: panic – then buy an entire playground on Amazon. 
2. Keep to your normal routine as much as possible. We went for daily walks past the twins’ school and around the playground they used to visit daily (although locked), to keep them to their normal routine. My son, who relies on his routines, really benefitted from this and it kept some consistency with our “old life”.
3. Break up the day into small chunks. Some days seemed endlessly long, especially when the weather wasn’t great, so we broke the day up into small tasks and activities. I tried as much as possible to replicate their nursery experience for them in the mornings, with outdoor time and our daily outing in the afternoons.
4. Video calls to familiar faces – especially the grandparents, their friends and family members. 
5. Change of scene – get out into the garden or for a walk when cabin fever looms.

Finally, the Autism Unravelled team would like to thank Randa for taking the time to share her experiences and advice in such an honest and illuminating way. We are sure it will support families undergoing an autism assessment.