You may find us looking for a diagnosis, having had one or are supporting a family with or without diagnosis, we remember how difficult this time can be. Many of our families talk about the exhaustion & grief they feel, the emptiness and the fear alongside an overwhelming desire to seek answers. With long waiting lists for diagnosis we know that this time seems never ending.
We hope that we can offer you a warm hand to hold throughout this time and where you will feel reassured that we get it, we will support you in finding your feet again and signpost you to the things that worked for us. We will share the lows but also the marathon wins of our miracles.
Our friends group offer this openly, confidentially and with support we will walk you through what we did and where we are with it all now. Please find below some of our stories of how we found our way through to diagnosis or decisions of not getting a diagnosis.
In the South West it has been challenging in recent years to find a diagnosis as is the same in many other parts of the country. This is due to the complexity of the diagnosis itself, lack of conclusive birth history but also a lack of trained clinicians who can diagnose.
Paediatricians say they have found it helpful if we keep a diary of new and emerging needs which you can then summarise in a couple of pages for the paediatricians meeting. This useful checklist (suggestions below) might guide the types of things you may or may not see; remember FASD is a spectrum so every child is different.
If you suspect your child or young person might have FASD and you wish to explore the diagnostic route then please contact us for support and discuss what you see with your GP, they will ask you some questions then refer you to a paediatrician. If you need more help with this referral or have any questions please do contact us through our contacts page.
Further below you will find some real examples from parents who have navigated the system that you might find helpful; all examples have been anonymised but are written by them & are from lived experiences.
Whilst waiting for the appointment prepare by gathering the following:
A short summary of birth history to include alcohol & any drugs which includes both genetic parents and genetic grandparents. The epigenetic history is important to diagnosis as with a strong history of family members who are for example alcoholics or regular drinkers this could show a pattern. Drugs evidence helps too as research tells us the two come together as a drug addict who cannot get a fix will often use alcohol to substitute. If you do not have this level of information please ask Post Adoption Support or family members to make a request to retrieve birth files which will include medical and all Police CP/adoption order files as often the Police will arrive and note that a parent was found to have been drinking and this might coincide with being pregnant. You only need a sentence to show this evidence which makes a huge difference.
A summary of emerging needs and what you see now, give brief examples.
Use the template HERE as a guide to help you summarise what you see, so if you recognise any FASD traits make a note of it, this will help you think about everything as a pattern..... don't forget FASD is a Spectrum so what we see in one child is very different for another so the template is just a guide.
As often our little ones don't like to be examined by a stranger its a good plan to prepare for every eventuality at the appointment so take in .... a photo of little ones face not smiling, some photos of similar as a baby, photo of feet, photo of ears, close up photo of palm of hand. Looking here for markers of FASD.
The summary should not be a 'war and peace' size journal as the GP or paediatrician will never have time to read it, as a general guide approximately 3 sides of A4 will have their eyes glossing over.
We recommend going in to the appointment first on your own with the summary paper in hand, so you don't have to talk with little one listening, good to take the ipad & snacks as entertainment as they have currently taken all the toys away in the clinics due to covid (!) and someone supporting you in the waiting room.
Alternatively if the paediatrician is not experienced, a holistic assessment to look at a multi-disciplinary assessment of needs by someone with expertise of trauma and attachment and a variety of neurodevelopmental conditions is needed.
Your post adoption worker or kinship support worker should know how to write an application so it can be approved by the Adoption Support Fund as that is a key part of their job role. It is possible in the South West to apply to the Adoption Support Fund for a multi-disciplinary assessment that includes FASD & linked co-morbid conditions or seek other possible routes of funding here
Some other useful tips can be found here of what evidence to gather along the way to support a route to diagnosis here.
Jane & Nigels story....
We adopted our children after having been through loss of a child. We adopted our first son at 7 months and then shortly afterwards another one came along who was a full sibling who we foster to adopted at 4 days old. Our lives suddenly turned around and we started smiling again.
We soon saw things emerging that we didn't recognise from friends children and these things started forming patterns of unusual behaviour.
We initially tried to dismiss things as everyone around us said it was due to the trauma, due to attachment difficulties or that all children did that!
My son would scream and scream for no reason..... but for hours, he would forget things even if he was holding what he was looking for in his hand, he had excellent language skills way above his peers but he didn't really understand what he was saying. He was really delayed in toilet training and could not play imaginatively or struggled to understand social rules with other children.
School was difficult as he would mask how he really felt and then when coming home from school he would explode.
Our younger son couldn't mask he was/is (!!) very impulsive, hyperactive and bounces on literally everything. Can go from 0 - 100 in seconds but is rarely on 0!
We started talking about what we saw with the health visitor who sadly had no clue to what supporting a child with trauma was like let alone unpicking what we were seeing.
We thought it was autism as so much of my research kept showing where he showed traits of the spectrum. So after going to our GP for referral to paediatrics we eventually got signposted for assessment but this took 2 years on a waiting list!
No one thought to look into the birth history which seems so obvious now that I know all of this but then we were like rabbits in headlights.
We got through the Autism assessment to find that he didn't quite fit the criteria but had 'autistic traits'..... we then fell apart for a bit as we felt like we had not been believed and no-one was listening.
After picking ourselves up we wrote down and searched for the symptoms of the things we were seeing that seemed to cluster together and found a Canadian piece of research on FASD Fetal Alcohol Spectrum Disorder... it was incredible as there were just so many things that fitted.
We spoke to our GP who wrote to the Paediatrician; he told us to write everything down before going into the appointment, this massively helped us and him.
We asked post adoption support for a copy of all the birth files which included medical, convictions and family history. This was hard reading but very important to find anything that linked alcohol.
We took in the summary of what we saw and all of the birth history that we knew about, this included birth grandparents and other sibling diagnosis.
I went into the appointment first leaving my partner with our son; I talked about everything we saw and what we knew. He said it was probably not FASD but he would take a look at our son any way.... when we went in the paediatrician said "yes" within minutes!
We then went on to have bloods taken where they looked at a number of other things to discount (this is called micro array or genetic testing which must come back normal). It was then confirmed that my son had FASD. We then went on to have the same thing done for his brother which proved to be the same.
After trying to find a diagnosis for some time we felt like a ton of bricks hit us, a huge sense of loss and a similar feeling as when we lost our child. This triggered all sorts of emotions that we hadn't realised that we had dealt with.
Gradually by talking to other parents with or without diagnosis we started moving forwards. We felt at last a real sense of belonging and reassurance. Yes of course we have really hard days where we want to do the screaming but at last we could talk openly with people that 'get it' and did not make us feel embarrassed like we did in the School playground. We found ourselves coming out of the shadows again.
We have learnt to treat our children as complete individuals, we look for the ability and encourage it. We don't look at development charts or what they can't do, we celebrate what they can do!
They love forest school, repairing or having a go at anything with a screwdriver, are incredibly funny, very skilled in Lego construction, caring with animals and good cake testers! ...... our little miracles, we are very proud of them and us.
Kate & Tim's story ....
Our son came to us at 22 months old and was a very full on toddler. Issues started to appear soon after starting nursery a year later. Apart from major separation anxiety he had started having full meltdowns where he would scratch and bite the staff. We had some support from Early Years team but soon after he was given a weeks notice to leave.
We were both working at the time and terrified about how we were going to manage so we called post adoption support team for advice. We were allocated a temporary social worker who went on to change our lives and is still part of our family now (he is now 11).
She was the first person to explain about his trauma nurture timeline and that he was suffering with attachment disorder. She helped us navigate a really tough time and gave us a therapeutic parenting course which helped us so much and with a lot of self learning came the understanding.
Not long after she left to go into a private therapy service that we accessed through the ASF on and off ever since.
During these therapy sessions it became clear there was something more than attachment and sensory issues going on and she thought it may be FASD. We were referred to a geneticist in Plymouth who basically dismissed us, no tests, no listening really and said to get on with it.
About three years later and still only getting so far with therapy and school struggles getting worse and worse and worse, (we have been through mainstream, profound specialist school and a specialist trauma school and are now on a Eotas package), our amazing therapist recommended we see DR Turnpenny, the lead authority on FASD in the southwest at the time.
We had to go back to paediatrics and ask for a referral and eventually got one. He wasn’t the most patient of Dr’s but wow he was good. Went through the genetic blood tests and listened to his trauma nurture information and how he was presenting as well as doing all the facial feature tests.
At the end of the session he was diagnosed with FASD, borderline facial features but plain as day in behaviour.
Diagnosis day was a tough one and you never feel how you would expect. We were relieved the fight had been worth it and we had some answers and more ideas of how to support our amazing boy but it was hard also knowing that trauma effects can be repaired and undone but FASD is lifelong. There is always hope though and strategies can be learnt.
We know he is amazing and has a really bright future ahead.
One of the best things that has happened to me here in England is finding the FASD Southwest group. Thanks to all the families and the people there, I find myself accompanied, understood and not judged. I have found more than friends, a true family. Thanks from my heart!
My adopted son was born at six months of pregnancy, he had a traumatic birth at home, he was born HIV-positive (he later became negative at 18 months), he spent the first 4 months of his life in the hospital, and then he went to the orphanage where we were told he was badly mistreated.
He has been with us since he was 23 months old, and we have always noticed that he was not the same as his sister, my oldest adopted daughter.
I always had the suspicion that he had some degree of autism and the suspicion of Fetal Alcoholic Syndrome, but, at that time, where we lived in Spain it was not even known, and the doctors we went to told us no, that his whole problem was behavioural and that he had ADHD and that we had to medicate him.
Since he started in kindergarten, his entire school stage in Spain has been a real nightmare and agony.
When the time came to go to secondary school, we knew that he was not in a position to do it, he was not prepared, he was very immature and he did not have any knowledge or academic level to do it. But the school and the authorities of the place where we lived wanted to get rid of him.
Since he arrived he had a ‘magnet’ to approach and join with everything dangerous, with the most problematic people…. and so I exposed it to the authorities, but they ignored me. At the time, when he entered secondary school at the age of 12, he was only diagnosed with ADHD and Reactive Attachment Disorder. We kept doing tests and more tests, trying to find a diagnosis that fit his behaviour but it was not possible.
Everyone; the specialists, the professionals told us that he was completely ‘normal’ and that it was my imagination, and that it was our fault for being adoptive parents who had not known how to educate our son.
It was time for him to start secondary school. I found a school, which could work ‘on paper’, but you know that paper supports everything, reality and the day to day afterward, unfortunately, is very different. Despite having my doubts and being very afraid to send him to that place, we did it because it was the only option we had.
It was a site in which there were many children with problems... but they assured us that they controlled at all times that diverse and different problems were not mixed and that the teaching was totally individualised, personalised and that it would always be supervised. Sadly, it wasn't.
Fifteen days after starting, at the age of 12, he began to smoke cigarettes (more than a pack a day), to smoke joints, to steal, to escape from school by jumping the fences, to break the vending machines to steal money or the products that were inside... everything escalating quickly as you can imagine and more.
In Spain, teaching at home is not regulated and you have to ask a judge to give you permission to do so, you have to present a disability that he had not been diagnosed with…. we felt desperate to help our children.
Some friends with adopted children, with experience of the Spanish educational system, had come to England and the experience had worked for them.
My children & I moved to England, my husband stayed in Spain to fund our journey by working in his family business where he remains today.
Our children were both happy, for the first time at school. It is true that the school they went to, by chance, was fantastic and, from the first moment, they understood his problem and helped me in any way they could.
I applied for an EHCP, and in October 2020 they accepted my application. My sons psychiatrist in the UK helped me a lot, and I also went to a genetist in Exeter. Now he is diagnosed with FASD, Autism, ADHD, sensory problems and Reactive Attachment Disorder.
Around that time, that same year, he was in Year 11, and the school, within his EHCP, looked for a center so that he could go three days a week, to do Entry levels of English and mathematics, and Animal Care, so he would not sit for GCSEs (as he was not prepared in any way).
In this college, the nightmare that we had lived in Spain began to repeat itself. My son, not having any surveillance, started smoking again, stealing, running away…. before it was too late, I decided he couldn't stay there. I explained the situation at school, and he returned to school five days a week, with a fairly adapted teaching, although it was not ideal.
I had to think about which center he was going to go to when he finished Year 11, none of the colleges that were offered to me would work, because had to be in a place where he was supervised at all times, a totally 1-to-1 teaching, based on practical training and starting from the base, since he had little knowledge.
I found the right college, and luckily not far from my house, but it was not a college offered by the Local Authority.
Everyone told me that they were not going to grant it to me, that it was very difficult. It is a college with less than 30 students and for each subject, each student has a teacher.
My son was at home, with me, from May to November 2021. During that time they told me that I had to propose some other college in case they did not grant me the attendance to the one I wanted and asked, but I refused, because there was none that, in my opinion, it would work.
At the end of October, he got a place at this college, and started after October half term. He goes three days a week. Now ‘I'm fighting’ with the Council so that they allow him to go five days a week.
He is happy…..he is really very happy.
He does physical education, mechanics, English, math, art, and Life Skills. In each subject he is alone with a teacher. In some subjects, he interacts with other students, always accompanied by their respective teachers. As I arrive at school in the car, a teacher comes to pick him up, and at the end of the school day, the teacher walks him to the car. At all times he is accompanied. Also, the school is in the middle of nowhere, so there are no shops, no distractions, you don't see a single cigarette...
My daughter came to me at the age of 3 ½ and I adopted her 12 months later. She is now approaching her 17th birthday, and whilst the last 13 years have been hugely challenging, I believe and fervently hope that the worst is behind us.
My “journey” to adoption came about after six failed IUI and seven failed IVF attempts, which had left me emotionally fragile and financially vulnerable, but nevertheless determined to bring a child into my life.
A number of meetings were held with the local authority and I was able to ask lots of questions about my child, her birth parents, her life story and most importantly about her FASD status. She had not had a formal diagnosis at that point but because of her mother’s lifestyle and history it was highly likely that she was exposed to high levels of alcohol (and drugs) at least during the first trimester of the pregnancy.
Because of her potential diagnosis I wanted to investigate the reality of living with FASD (for my daughter) and for myself, understand what I would be taking on in adopting such a child. I contacted NOFAS who were wonderfully welcoming, honest and open in sharing experiences.
FASD or non-FASD diagnosed – adopted children are traumatised children who need huge emotional investment and parental resilience. Adoption is not for the faint-hearted and I have discovered hidden strengths (and downright belligerence) in defence of and support for my daughter’s well-being!
The local village school and wider community were very welcoming but it soon became apparent that my daughter was struggling to progress and register any real attainment. The school was reluctant to carry out any formal assessments or screening for e.g. dyslexia, preferring to support her with 1-2-1 sessions outside the classroom with teaching assistants.
At the age of about seven, behaviour at home started to become alarming with bouts of physical violence and frequent refusal to co-operate. I realised I/we needed help and requested the support of a social worker from the post adoption team.
Once our social worker put us in touch with the wonderful Cathy Hillman and achieving a FASD diagnosis became a relatively straight-forward exercise for us. An assessment with Prof Turnpeny was arranged in Feb 2016.
Armed with his diagnosis I was able to secure SEND funding from the LA to support my daughter’s attendance at a local specialist school for children with dyslexia and dyscalculia. We did not even need to go to Tribunal to secure this financial support.
She now attends a specialist school which caters for children with a variety of neuro-diverse challenges. She has never been happier. She achieved a Level 3 in her English GCSE (having been disapplied from KS2 SATs, this was an enormous achievement). Currently, every Wednesday afternoon she does work experience in a nearby school-run café which is really boosting her self-esteem. In the past she has fretted about not being able to hold down a job, or earn a living, or live independently. Gradually her self-belief is growing.
And unbelievably, this last half term I was able to visit a friend in Spain for 5 nights - without my daughter! The first time we had been separated (other than for a couple of school-organised camping trips) since 2008! There were tears of joy from both of us (but mostly me) when I got home!
It is true that simply loving them is not enough – therapeutic parenting has helped me to tune into my child and I can now sometimes pre-empt crises and I avoid situations that I know will make her anxious. Sadly for me this means that my adventurous, traveller spirit is somewhat tempered, but I live in hope that next time I get an opportunity to travel, my daughter might just decide that she will prefer to come with me!
I have described living with FASD as Groundhog Day – and to a degree it certainly is – repetition, repetition, repetition is one of the keys to success.
Living with FASD is a daily challenge for me as a fully functioning adult, but more importantly for my daughter who has to navigate the challenges presented by everyday life. I am so immensely proud of her.
James & Peter
As a foster carers we saw a pattern of needs in our young man and just knew it must be something more than trauma or his early life experiences. He took so long to process things, he struggled in basic relationships, he was amazing at talking and highly skilled in certain things but really half his age in other things. Initially we thought Autism but it didn't quite fit & we knew that there had been alcohol with his birth family. It was totally a lightbulb going on moment when we attended an FASD course. After that I did all I could to find out more and there it was too many boxes ticked to ignore it. I started thinking about the other children we had supported and just felt like so many pieces started fitting together. We spoke to the FASD South West support group to find out what we needed to gather as way of evidence and went from there, they were so amazing and gave us loads of ideas. Since getting a diagnosis we have been able to work with the School to get much better scaffolding for his needs. There was always doubt put on us like we were making it up or that we were 'just foster carers' (how very dare they!).
I would recommend seeking diagnosis to anyone as that piece of paper provides credibility and funding as it opens doors for applications to support needs as well as providing answers to questions our lad had about why he feels the way he does.
I found it really helpful to talk about the things we were seeing with other parents and carers; I learnt things about how to try and try again, how to not overwhelm our lad with information, keep language or instruction simple, leave time from the question to wait for his answer. Game changer was the sensory needs support from the group which has massively changed all the aggression we had been seeing.
Jen & Pete
We joined the group before Christmas, after learning about the group from Dr Cassie Jackson’s webinar. Although we are in Worcestershire, this is our nearest group. It’s a shame we are not closer to taking part in the meetups and coffee!! But we love the Whatsapp & Facebook support.
We have a 10-year-old son diagnosed with SPD & development trauma. We are on Cassie Jackson’s list for formal FASD diagnosis. We have some facial features, hypermobility, flat feet and bendy pinkies, so many typical physical traits, along with many of the behaviours associated with FASD.
A positive message to those currently struggling with lots of dysregulation, difficulties in mainstream, school refusal, and generally feeling overwhelmed. We have had all of this and more, but for the past 2 years, we now have a very settled, happy, school engaging young man 🤞 Things that have helped us on our journey are:
• Not to take behaviours personally and find a mantra for those intense moments, because those moments do pass, and tomorrow is always another day
• We dropped the neurotypical expectations. Moved focus from his areas of weakness to areas of strengths, of which he has many. Celebrated them, encouraged them & had fun
• Picked our battles. Dropped the small stuff. Set consistent boundaries, kept instructions short, said fewer words (difficult for me!) and had no grey areas!
• When we suspected FASD, we switched focus from 'attachment' to FASD and quickly learned as much as we could. We started using FASD strategies rather than attachment-based ones, which worked
• When we suspected sensory processing difficulties, we applied to the ASF for a full assessment with a private OT and, as our child had trauma, with a trauma-informed one. This was the most critical thing that has helped our son
• After 2 years of struggling in mainstream, our child constantly living in fight/flight, being secluded from peers, we pushed for an EHCP whilst still enrolled.
• We moved him from mainstream to a nurturing SEN school. He has now been here 3 years, is happy, has friends, engages with schoolwork and is a different all-round child
• We worked with the school to educate about FASD and to build a sensory diet for the school day. Created an “about me” sheet, so they understood about our child his triggers and behaviours were supported early to stop dysregulation
• Drip feeding FASD diagnosis to our son. You could see the penny drop! It was like a weight had been lifted off his tiny shoulders. Once he understood, he grew in confidence and is now using learnt strategies independently to help regulate himself through the difficult times of the day.
So whilst we wait for a formal diagnosis we got our ASF application in the queue but chose to get other support in the form of a Paediatric Trauma Occupational Health Assessment .... this was the game changer.