Working with Asperger Couples Online

ASD-Specific Couples Counseling
If you or your partner has a diagnosed or suspected case of Asperger Syndrome or Autism Spectrum Disorder (ASD), it’s important to seek counseling with an ASD-specific couples counselor.

Counselors who are not familiar with ASD often tend to ascribe an Asperger or neurodiverse couple’s conflicts and challenges to “personality clashes,” or family of origin issues. Uninformed counselors may not understand the intentions of either partner, and so perpetuate the confusion that exists in many of these neurodiverse or Asperger relationships. More importantly, when the counselor doesn’t understand ASD, he might not be able to see how the Asperger traits of the partner might be affecting the relationship and intensifying the conflict.

An untrained couples counselor may not fully take into account the pervasive nature of ASD. Counseling that fails to address the ASD issues not only perpetuates a couple’s unhappiness, it can even bring about the demise of the relationship. The longevity and survival of many neurodiverse marriages depends on finding an ASD-specific couples counselor.

Many couples that I see report having previously seen other counselors who did not understand the neurodiverse aspect of their relationship. Some couples say things like, “We’ve been in couples counseling for eight out of the 12 years we’ve been married, but our issues never really got resolved.” It’s common for me to be the second or in some cases the fourth or fifth counselor that the couple has seen.

An ASD-specific couples counselor who is experienced with relationships where one partner has diagnosed or suspected Asperger’s/autism and the other is neurotypical or non-spectrum (NS) can provide both partners with information about ASD, help them understand ASD traits, each other’s perspectives, create a safe space where both partners can speak honestly, help the partners create and implement strategies tailored to ASD, and provide accountability, motivation, and support to move the couple in a positive direction.

-Working with Asperger Couples Online
Due to the lack of ASD specialists and counselors for adults with ASD, I’ve been working with Asperger couples and individuals via the phone and video conferencing since 2012. Rather than jeopardize an already delicate situation or a marriage in crisis by working with a counselor who many not know how to address the ASD-specific issues, many couples chose to work with me online. So far, I’ve worked with numerous individuals and couples from as far as Africa, India, Australia, Europe, Canada, Mexico and various parts of the United States. I typically use Skype, Facetime or Google Hangout to work with my clients.

Most of my clients find our work together useful and they are able to benefit from the discussions, problem solving, and strategies that we come up with in these online sessions. The Asperger-specific strategies that couples and individuals find useful in our in person sessions translate well into the online sessions as well.

-Strategies that Work In Person Work Online As well
Identifying ASD traits that are contributing to problems in the marriage is key. Untangling the neurotypical or nonspectrum (NS) partner’s own issues from their partner’s ASD is also important. Couples counseling for neurodiverse couples, is most useful when concrete, actionsteps, and ‘to-do’ strategies are implemented within the ASD framework. It is important that strategies be nonjudgmental, clear, directive, and collaborative in creating solutions in your marriage or relationship.

Using Cognitive Behavioral Therapy (CBT) to identify distortions in thinking for both partners is helpful. For example, a particular NS partner might have a tendency to hyperfocus on their partner’s issues rather than their own areas of growth. Or the partner with ASD, because of their high anxiety around money, may paint a dire picture of their financial situation, when the truth may be far from it. While, listening to and validating both partners’ concerns, fears and experiences, it’s necessary that the couples counselor is able to discern the truth and get to the reality of a couple’s situation.

Many couples take notes on strategies that we identify. They work just as hard to implement these new behaviors and solutions as my in-person clients.

-How Long Can Couples Expect to Be in Counseling?
I often say to couples that watching a marriage improve is like watching a tree grow. We are unable to see a seed sprouting into a plant. However, a time-release camera that took a picture of the growing sapling every day, would enable us to see each millimeter of progress. Over the course of a year, we would also see a grown tree.

How long does it take for the average Asperger couple to get their marriage back on track? This truly depends on each individual couple. The process of resolving their marriage can take regular weekly or biweekly sessions over several months or even a couple of years in some cases. I’ve seen couples who’ve flown from out of state to see me for a few intensive sessions over a weekend, and who’ve reported great success. Couples who fly in to see me for intensive sessions, typically continue to work with me online.

After the initial phase of a few months of intensive couples counseling is done, most couples continue on for maintenance even a few years after. Once the initial phase of couples work is done, some couples chose to seek out counseling during major life-stressors or decisions.

Why does it take a few months to a year or longer of couples in counseling in order to see long-term changes? Just like with anything else, whether it’s exercise or healthy eating, resetting negative patterns of interaction that were established over years take time to change. The other thing is while change is difficult for most people, for individuals with ASD, change can be even harder. Shedding old ways of thinking, being and relating to each other is always fraught with challenges, but with persistence and hard work anything is possible.

And there are other couples who come indefinitely, with no time frame in mind. Many times, these couples tend not to have children as yet, or be in the stage of life where their children are grown or have left the home. Long-term couples counseling gives many couples the accountability, motivation, and space for marital connectedness. Though even long-term couples can eventually settle on coming once a month for maintenance. Other couples taper off regular sessions and come on an as-needed basis during a particular life-stressor or event.

-The Value of Couples Counseling
Not attending to relationship issues while married can often lead to divorce, and the price tag is high. For many couples divorce can cost thousands of dollars. Not to mention a decline in income for both partners. For example, if there children involved, there is a decade or two of child support payments for the primary earner in the relationship, which can be about 30 percent of his income. For the nonearning or lower income partner in the relationship, the decline in income can also take years to recover from. Financial costs aside, the end of a marriage can take a significant emotional, mental and physical toll on the couple and their children if any.

When partners are unhappy in their marriage and chose not to seek counseling, it can affect their job performance, and have longterm psychological and even physical problems. It’s important to weigh the cost of couple’s counseling in terms of money and time against the very lives of the couples and their families. Of course there are always cases where couples might not want to stay together and a separation and a divorce is the best decision for them.

-Online Sessions
Out of state online sessions aren’t covered by health insurance. I offer couples packages of 2 sessions or 5 sessions each. The 5 package session comes with an initial half an hour of free consultation. After the initial 2 or 5 sessions have run out, couples may choose to buy more packages or schedule additional sessions as we go. If you’re interested in setting up a session with me, please email me at


Eva Mendes, LMHC, NCC is the author of Marriage and Lasting Relationships with Asperger Syndrome: Successful Strategies for Couples or Counselors. Eva works with individuals with Asperger Syndrome, and autism. An expert on relationships and social communication issues, Eva has spoken at conferences and colleges and has written several papers on this subject. She has a private practice in Arlington, MA where she sees couples and individuals for counseling inperson; she is also available to work with clients via Skype and phone. Eva leads the popular Spouse and the Couple’s Support Groups at the Asperger/Autism Network in Watertown. She is also a longtime yoga practitioner, and a Buddhist. Her website is

Talking about BIG problems with your autistic child

Jones_Talk-to-Me-Conv_978-1-84905-428-7_colourjpg-printHeather Jones is the author of Talk to Me: Conversation Strategies for Parents of Children on the Autism Spectrum or Speech and Language Impairments – in this new blog she talks about how she was able to talk about a recent health scare with her son Jamie, who has an autism spectrum condition.


Recently I had a scare. A big scare.


I’d gone for a barrage of tests (as that’s what doctors do to women of my age) because I had recently returned from living in another country…and the ultrasound on my breast showed a lump. The lump had shady contours, and this led them to recommend a mammogram – immediately. Once I’d had the mammogram, they bundled me off to my GP clutching the X-rays, saying it was an urgent matter and I should see her straight away.

Later that afternoon I was in the doctor’s office, as she explained to me what every word of the radiologist’s reports meant. “They think it’s cancerous,” she said as soon as I walked in. Then she explained what ‘neoplastic lesion’ meant. And she booked me in for a day-long appointment at the local breast clinic.

So there I was – four days before I would have definitive results telling me how far advanced the cancer was, and faced with the decision on who to tell, how and when.

As soon as I walked out of the GP’s office, I knew I had to tell Jamie. My 20-year-old son has Asperger’s (or high-functioning autism) and severe speech and language problems. I’ve been working with him on his communication and conversation for years, and I’d have to tell him first. But how?

I decided the best way was to be as truthful as possible, but not let on too much too soon.



“I went to the doctor’s today.” A pause. “And the doctor felt my breast and found a lump.”

“A lump?”

“Yes, a small round ball of tissue beneath the surface.”


“They want to look at it more closely and see what it is.”

“Are you sick?”

“No, they have to find out. But they need to know if it’s cancer or not.”

I didn’t want to say the word, but I certainly didn’t want to have conversations around the house or on the phone where Jamie could overhear what was said and be even more worried.

Unfortunately, Jamie had watched a TV series last year where one of the characters developed breast cancer and died. He was immediately anxious. His Facebook comments say it all:

I’m feeling sad right, my mum………… my…… mum….. (crying) oh…… she’s got…….. (sniffs) she’s got a lump in one of her breasts…….. (crying), ………. I don’t know if she’ll be alright or not, breast cancer is not alright, and if I’m the only son left in the house does that mean, I’ll have to do everything that all grown ups do, I’m suffering because it’s happening, I never even know that this would happened, I thought I would stay with her and not think that breast cancer would happen,…. man that’s so wrong, so wrong.

 — feeling sad.

I was so choked up when I read that, but at least it gave me an insight into what his real fears were – being a grown-up without me to care for him. As soon as I read his post, I sought him out and talked him through it, explaining how there was so much they can do now to help it, how it’s been caught early, and so on. I reassured him that he would have family to help him. I would never leave him on his own.

After the tests at the breast clinic, the specialist rang me at home and said that the lumps were benign. I was absolutely thrilled and went straight to tell Jamie.

“Hell, yeah!” he shouted, punching the air. “Hell yeah!”

He wrote on Facebook that night:

My mum lives, no breast cancer, no losing someone who’s been doing everything for me from time to time, and no suffering.

It was a glorious day – but I don’t regret telling him and being clear from the start that it might be a dangerous situation. I want him to know I will always tell him the truth and not keep bad news from him. Our love for each other is powerful, and can only be strengthened when honesty is expected and returned.


Heather Jones is the author of Talk to Me: Conversation Strategies for Parents of Children on the Autism Spectrum or Speech and Language Impairments which is available in paperback or e-Book from Jessica Kingsley Publishers

For more information about Heather, her book and the work that she does please visit


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Dyslexia, self-harm and attempted suicide

 Research shows that at least 5% of schoolchildren are likely to have dyslexia.  Children sometimes lack the maturity to ask for help and things can go sour when they’re left to fend for themselves. With the aim to assist both parents and educational practitioners to recognise the emotional turmoil that young dyslexics face in life, Neil Alexander-Passe explains the link between dyslexia, self-harm and attempted suicide. The author’s new book Dyslexia and Mental Health: Helping people identify destructive behaviours and find positive ways to cope is out now.




School – legally enforced torture

If you were forced to attend school in Japan without the aptitude to understand the language nor pens and pencils to record what is required, you might not mind if it were only for one day. However, imagine you were legally forced to go five days a week for eight hours a day for ten or more years. Is this fair? I’m sure you would agree not. Well this is exactly how a dyslexic feels. They lack the skills and tools to understand school, and are marked poorly by the lack of such abilities. Everywhere they turn, they see books, and the ability to read and write are valued above all other skills. You can appreciate that they could feel helpless and lacked of control in their lives.

To make matters worse, most teachers lack the skills and aptitude to recognise a struggling learner in their classrooms. It must be said that dyslexic children begin to develop self-protecting strategies to camouflage themselves from showing up their lack of skills, especially amongst their able-bodied peers. Such strategies can include: hiding in class, being the class clown to cover up for the lack of abilities, being the class helper to avoid writing tasks, forgetting homework on purpose, and calling in sick to avoid lessons when there are spelling tests or they need to give in homework. They develop sensitive antennas for situations that might highlight their difficulties, and quickly put in place back-up plans to avoid trouble.

It should also be recognised that children sometimes lack the maturity to ask for help from teachers, and get bored waiting in a long line for help. Calling out in class is sometimes seen ‘bad behaviour’ but in reality it is the child asking for help, albeit not in the way the teacher would prefer.


Regaining control in a world they can’t control

When dyslexics feel that they have no control over their life at home and at school, and feel like failures at everything they try to achieve, they begin to look for ways to feel better.

We all can recognise comfort eating; maybe a chocolate bar when you feel sad – but self-harm goes beyond this. Food, if taken to extremes can give an individual some control in a world they feel is uncontrollable. They are forced to go to school each day; even though they hate it and are taught in ways they can’t learn. Over-eating and becoming obese can protect them from social situations that might require them to read or write (e.g. reading the bus timetable; reading numbers on a bus to meet up with friends; reading the name of the film being shown at the cinema; reading a timetable etc.). They might take the other extreme and think if they didn’t eat they would be so small and thin that no one would recognise and take note of them.

Others see that drugs are a way to escape the harsh world they believe they live in, so sniffing glue or taking drugs will bring a high that allows them a respite/escape even for minutes from the pain they feel at school and home, being socially excluded or by them not having a job.

Self-harm through cutting allows a sense of control in their lives, it also gives an adrenaline high to the body. It allows an individual to regain control of some aspect of their life, however it can become more dangerous in their pursuit of this natural high. Easy to hide at first but harder as time goes by with constant cutting.

In the extreme, the need for an escape through risk-taking can lead to putting one’s life in even more dangerous situations (e.g. playing on train lines, getting into fights), however it is with attempted suicide that can be shocking in young dyslexics from a very young age of seven years old. They want to escape a world they feel excluded from, they also see the pain and anguish they are putting their parents through and want to save them from further pain. Sadly many dyslexics do take their lives but such deaths are unrecorded as they haven’t left a suicide note, as that would require writing, a task they feel is very hard and they want an escape from.

It is interesting to note that some dyslexics get into fights to break bones, especially arms and hands to avoid writing tests. Such calculated lengths to avoid taking tests should be recognised, along with unrecognised dyslexic children forcing themselves to be sick just before a test to avoid being judged badly in front of peers. The lengths some dyslexics go to preserve what self-esteem they have can be remarkable.


What can be done?

  • Schools need to screen and put in place interventions to help dyslexic and other struggling learners.
  • Schools need to provide counsellors for children who experience difficulty learning at school, as the emotional effects of failure can lead to social exclusion, depression and self-harming.
  • Teachers need to recognise the avoidance by children, ask themselves why, and act to question if there is a learning difficulty or another barrier to their learning e.g. avoiding reading and writing.
  • Teachers need to read through secondary behavioural manifestations in pupils and look to understand their primary learning needs. What is bad behaviour covering up? Are they lost in class? Have they missed vital stepping stones to learning? Are they using bad behaviour to cover up for their struggle to understand what is required?
  • Parents need to recognise the signs of self-harm and depression in their children, so that they can refer them to specialist teams for help.
  • Parents need to praise the effort, not the end result, and support their children to focus on strengths not weaknesses.


Neil Alexander-Passe is the Head of Learning Support (SENCO) at Mill Hill School in London, UK, as well as being a special needs teacher and researcher. He has taught in mainstream state, independent and special education sector schools, and also several pupil referral units. He specialises in students with dyslexia, emotional and behavioural difficulties, ADHD and autism. Neil has written extensively on the subject of dyslexia and emotional coping and, being dyslexic himself, brings empathy and an alternative perspective to the field. Find out more about Neil’s work here.

Learn more about Dyslexia and Mental Health here.

Read Neil’s other blog post: The lifelong social and emotional effects of dyslexia

The lifelong social and emotional effects of dyslexia

With the aim to assist both parents and educational practitioners to recognise the emotional turmoil that both young and older dyslexics face in life, Neil Alexander-Passe illustrates the lifelong social and emotional effects of dyslexia. The author’s new book Dyslexia and Mental Health: Helping people identify destructive behaviours and find positive ways to cope is out now.



What is dyslexia?

To most, dyslexia is the difficulty with words, but in truth the term is misleading. The true effects of dyslexia go well beyond having a difficulty with words and spelling, as it also affects the ability to remember names and facts, balance and the ability to tie shoe laces and tying ties, misreading and misunderstanding the relevance of numbers, to write neatly, and to recall facts once learnt (even from two minutes ago).


The young dyslexic

The effects of dyslexia are widespread, and in mainstream education everything the dyslexic has difficulty with is valued highly by teachers and their peers. Can they read fast and write neatly? Well, no. Can they remember spellings for a test? Well, no. Can they recall enough facts to write an essay? Well, no. So a young dyslexic will see their friends and peers perform at ‘normal’ rates and progress smoothly through school, and each year the gap widens. Unless teachers have knowledge of special needs and/or dyslexia, it is unlikely that the young dyslexic will be identified as having learning difficulties or differences.

Studies of teacher training courses and the knowledge-bases of teachers support the argument that most teachers are unqualified to recognise a dyslexic child in their midst. So what happens? The dyslexic child begins to see themselves as ‘abnormal’ and ‘stupid’, which is exactly what they are told, either openly by teachers or by their friends, or indirectly by being put on the ‘stupid’ table with the other ‘slow’ kids. Children know who the clever and not-so-clever ones are very fast, and no matter how teachers dress up mixed-ability classrooms, kids know! In the playground the clever kids mix within their own circles, excluding all the others as misfits.

Each year the dyslexic child falls even further behind their peers, and their common reaction is to give up even trying in class, as no matter how hard they try, they always seem to get the lowest marks. No matter how hard they revise spellings or facts, within minutes or hours such facts or spellings are lost like grains of sand.

Emotionally such failure on a daily or hourly basis is harsh. What can the dyslexic child do in such a hostile environment? Well, many withdraw and develop depressive symptoms to cope, as it’s easier that way.


The adult dyslexic

After ‘surviving’ school, maybe without any qualifications to their name, dyslexic young adults are faced with finding a job, or going to college to gain the qualifications they need to start an apprenticeship. They see their peers leave school with 8-10 GCSEs, and all they have is one or two qualifications in unvalued subjects, such as Art or Drama. They see their peers go to university or train up to any career that takes their fancy, but what can the dyslexic do? Do they have a choice? Not with the lack of qualifications they have. Their dreams of being lawyers or doctors are just that, dreams.

Do they either start on a low-level college course to develop their basic skills, take a job in manual labour, or be unemployed – they begin to question their place in society. Can they take their place, or are they excluded from a society that highly values those who can read and write? Once again, they see that withdrawal is a good option to protect their self-esteem, and again depression looms. Many find completing application forms so exhausting that they give up even applying for jobs or benefits, and some even turn to crime to make ends meet.


Dyslexics and their families

Parents of young dyslexics are bemused by their child who can orally seem intelligent but just cannot seem to cope at school. They know they work hard but nothing seems to stick. They know that no matter how long they work at writing an essay, it looks messy and rushed. Compared to their non-dyslexic children, they can see their dyslexic child starting to give up, and beginning to withdraw into a shell-like existence.

The dyslexic child begins to question their place in their family; it is almost like they don’t fit in. They begin to question if they were adopted, and many have been known to write ‘help me’ on signs in their bedroom windows, or even run away from home, as they feel trapped by a family that they don’t feel a part of. What does running away achieve? It manifests their anxiety about fitting in. It says to them that it’s better to leave as they don’t fit in, and that their parents and siblings do not understand them. Many keep a packed bag under their beds, even from an age as young as seven, so when the pressure gets too much, they can flee at a moment’s notice. Where do they go? Anywhere, as it must be better than a home that feels more like a prison.


What can be done?

  • Schools need to train teachers to recognise dyslexics in their classes. Research suggests that 20% of all school-aged children will have a learning difficulty at some point in their education, and dyslexia is the single most common difficulty. Seen severely in 5% of schoolchildren and another 5-10% more mildly, that’s at least one to two dyslexic children in each classroom.
  • Teacher training needs to teach recognition of learning difficulties.
  • All teachers are required by the UK government to be qualified to teach all children with special educational needs in their classrooms, but most lack this ability, so additional training is urgently required for them to ‘differentiate’ their lessons effectively.
  • Schools need to identify early and provide specialist teaching to children with special educational needs.
  • Schools need to provide counsellors for children who experience difficulty learning at school, as the emotional effects of failure can lead to social exclusion, depression and self-harm.
  • Teachers need to recognise the avoidance by children, ask themselves why, and act to question if there is a learning difficulty or another barrier to their learning e.g. avoiding reading and writing.
  • Parents need to praise the effort not the end result, and support their children to focus on strengths not weaknesses.


But don’t some dyslexics survive school and succeed in life?

Whilst it is true that some dyslexics do well in life (e.g. Richard Branson, Keira Knightley, Mollie King, Jamie Oliver, Tom Cruise), researching them you hear the same thing. School was hell and they left as soon as possible. They also highlight that they found something they were good at early on, maybe not school subjects such as English, Maths or Science, but vocational skills such as selling, persuading, acting, cooking, art and design, etc. This allowed them to balance the negativity at school with their ability to out shine their peers outside school. Ongoing research in dyslexia and success has found that each successful dyslexic has a ‘chip on their shoulder’ to prove everyone who ever doubted their ability wrong, to prove that they are not ‘stupid and thick’. They are driven by their school failure and humiliation to do well in life. Even returning to school for their own children is hard for them, they can have symptoms of Post-Traumatic Stress Disorder when seeing small chairs, smelling sickly floor cleaner, or seeing drawings pinned up on walls, as theirs were not deemed good enough for presentation.


Dyslexics, unless diagnosed and helped early on in their school career, will suffer from varying levels of emotional pain. Be it low self-esteem, self-doubt; withdrawal or running away from home. It is important to recognise that secondary bad behaviour is commonly covering up for primary difficulties, but most teachers are just satisfied by mislabelling pupils as troublemakers and try to move such needy pupils to a different teacher.


Neil Alexander-Passe is the Head of Learning Support (SENCO) at Mill Hill School in London, UK, as well as being a special needs teacher and researcher. He has taught in mainstream state, independent and special education sector schools, and also several pupil referral units. He specialises in students with dyslexia, emotional and behavioural difficulties, ADHD and autism. Neil has written extensively on the subject of dyslexia and emotional coping and, being dyslexic himself, brings empathy and an alternative perspective to the field. Find out more about Neil’s work here.

Learn more about Dyslexia and Mental Health here.

Read Neil’s other blog post: Dyslexia, self-harm and attempted suicide

2015 Family Choice Award Winner

The Pocket Occupational Therapist for Families of Children With Special Needs won a 2015 Family Choice Award!

Pediatric occupational therapist, Cara Koscinski, MOT, OTR/L, is the author of The Pocket Occupational Therapist for Families of Children With Special Needs. She was just 17 years old when she decided on her life long career. After shadowing an occupational therapist (OT) at a high school career day, her mind was made up. “I decided that day that’s what I wanted to do,” said Cara.” In fact, I applied to a university OT program as a junior in high school and never looked back. I never considered any other career.”

Little did she know that her passion, first ignited as a teen, would serve her so well in both her professional and personal life. Cara practiced occupational therapy, primarily serving an adult population, for years. It wasn’t until she had her sons and they were diagnosed with autism and sensory processing disorder that she made the switch to pediatric OT. Her younger son has mitochondrial disease, a severe case of Eosinophilic Esophagitis and uses a feeding tube for nourishment. At times, he requires a wheelchair to get around.

Cara believes her experience as a special needs mom gives her unique empathy for her clients and their families. “When I give my clients a home activity, I have personally tried it and know it works,” said Cara. “I feel very blessed to have the chance to use my professional expertise to help my own boys.”

As the author of this book, Cara brings her expertise as a pediatric occupational therapist and mother of two special needs children to parents, caregivers, families, and educators in an easy-to-read, easy-to-follow format. “I hope my readers will use the book during many times. For example, this week their child may be having difficulty with washing hair…next week it may be handwriting. The book is designed so that families can pick up the book and find exactly the help that they need.”

“I was surprised and honored to receive the nomination. I’m quite proud of the book and hope that this award will help readers to learn about the benefits of occupational therapy.”

For more information about Cara, visit her website at

First Hand Experience: Good and bad responses to self-harm from health professionals

In this frank and open post, Dr Pooky Knightsmith talks about self-harm and shares her own experiences, both good and bad, of responses from health professionals.

This post was originally shared on Pooky’s blog, here


Whilst it’s beyond horrible going through what I’m going through at the moment, I am learning a huge amount that will inform and motivate my work when I am better. Today I have been learning, first hand, about the stigma that surrounds self-harm. I have one very negative and one very positive story to tell.

I had an appointment with my psychologist yesterday, and he was concerned about my self-harm. Things have spiraled this week and he was concerned by the extent of some of my injuries. He felt they needed suturing and asked that I seek medical advice. I was not keen, but agreed to go.

I attended a local walk-in clinic today.   The experience was not good. On arrival, I was asked, in front of a busy room full of people, my reason for attending. I spoke quietly and was made to speak up and repeat myself more than once. The receptionist was harsh and cold, compounding every fear I had had before turning up that I may be met with stigma by health professionals (I hear stories of such stigma often in my work with young people). I sat, on the verge of panic, for 45 minutes before it became too much and I decided to go elsewhere. The receptionist questioned me loudly again as I left about why I was there, and when I asked for advice about a better time to return she was unhelpful and cold.

Unsurprisingly, the whole situation left me very, very upset, angry and ashamed; the urge to self-harm was still incredibly strong.   Thankfully, my husband (Tom) supported me through it. He suggested we go elsewhere as he knew I wanted to keep my promise to my psychologist, so I went to the GP surgery and was able to book an emergency appointment.

This experience was 100% different. The receptionist was kind and understanding. She dealt with my request matter-of-factly but also swiftly, sympathetically and quietly. She remembered me when I returned an hour later for my appointment looking worried and shaky, and she checked me in and pointed me to the waiting area (you usually check yourself in).

Already things were better. The receptionist told me exactly how long I’d be waiting, which wasn’t long. The GP was hugely understanding; she remembered me from the week before and asked after my grandfather, whose appointment she’d remembered me from. She recalled that he had just moved in with me and I was leading on his care, and she suggested a need for me to care for myself first. She looked at my injuries and discussed them with me without judgement, only with care. She explained which ones should have had sutures, but also told me that it was too late. She told me what to do differently next time so as to access the care that my wounds needed, and reminded me (as my psychologist had) that, whilst I felt I deserved to scar and was not motivated to aid healing now,  I needed to accept that this might change and a little more care with any future wounds would leave me with more options.

She also noted that I was shaky, and that this was because she thought I was developing an infection in some of my wounds. She prescribed antibiotics which I must take four times a day with no food for 45 minutes before or after. She noted my anorexia and spoke with me matter-of-factly about whether the antibiotic regime was likely to be harmful to my meal planning. We discussed how it might work. At no point did I feel ashamed or embarrassed, or that I needed to hide anything.

The GP was kind, caring, reassuring and direct. I felt looked after. I was not made to feel ashamed and I understood for the first time the extent of my injuries, which was a bit of a wakeup call.

So, a good experience and a bad experience.

But imagine that I was not me. Imagine I had not been stubborn in seeking help because I had promised Tom and my psychologist. Imagine I had not had the relentless support of my caring husband and wider support network. Imagine I was a scared child. What are the chances I would have tried again when the help was not appropriate the first time? I think the chances are very slim. I think I would have walked away and never returned. I would have walked away with infections developing and no insight into how to better care for myself in future.

So, what next… I have given Tom my blades. He is keeping them, and if I need them he will give them to me if he is not able to help me work through the situation. I feel confident that he will always be able to help me – and could have helped me in the past, save that I did not have the wherewithal to ask in those very difficult moments. Now I will have a motivation to ask and to accept his amazing support. It is a lot to ask of a husband, but he does it willingly. I do not underestimate how lucky I am.

Today has taught me first-hand just how much difference our experiences with healthcare professionals can make to our willingness and ability to access care. This is not a job I am well enough to tackle right now, but you can bet your bottom dollar it is going on my to-do list for when I am feeling better. Improving awareness and understanding of self-harm is one of the jobs I have done most often and most successfully in the last 24 months, but I now need to think how best to reach as many health professionals as possible. All suggestions gladly accepted…

As you’ll have noted, I’m working hard to be open and honest about my current battles with my mental health. I hope that this will prove a helpful insight for my network and, whilst I am regretfully too unwell to fulfill many of the engagements in my diary, I hope that you will support me on my journey back to health and help me to learn lessons along the way which will inform my future mental health work.


Dr Pooky Knightsmith completed her PhD in child and adolescent mental health at the Institute of Psychiatry, London, where she specialised in developing practical strategies for supporting self-harm and eating disorders in schools and other non-clinical settings. The strategies that Pooky advocates through her freelance work are all developed as a result of direct consultation with school staff and students, and she also seeks inspiration from her clinical colleagues at the world famous Maudsley Hospital, adapting and simplifying evidence based approaches for use by non-specialists. In addition to freelance training, speaking and writing, Pooky is currently the mental health and emotional wellbeing advisor at the PSHE Association, an associate trainer for the Charlie Waller Memorial trust, a trustee of Beat, the eating disorders charity and a trustee of the Kidstime Foundation which supports children of parents with mental health issues.

You can find out about Pooky’s book Self-Harm and Eating Disorders in Schools here

Or to find out more about Pooky’s work, visit her blog here

FASD: A life-long neurodevelopmental disability that needs to be SEEN

Liam Curran is a PhD INDI Social Sciences student at Concordia University, Montreal, Canada. He has over 25 years’ experience working with young people in residential homes, child and family social work and children’s disability services social work, and is also a member of the McGill University Centre for Research on Child and Families (CRCF), Montreal, Canada. In this post, he explains the biggest obstacle for many children with FASDs and those supporting them – having their disability acknowledged so they can access much needed support, and suggests how we can improve diagnosis and support for people with FASD.
You can find out more about FASD, how it affects individuals, how it can be identified, and how best to support those with FASD in Liam’s co-authored book, 
Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals.

A life-long neurodevelopmental disability that needs to be SEEN

It has long been established that Fetal Alcohol Spectrum Disorders (FASDs) have a significant impact on all aspects of child welfare provision. Perhaps one of the most recognised publications of the modern times was developed on the evidence of eight children suffering from ‘failure to thrive’ in the Washington Child Welfare system, who were taken by social workers to the clinic of paediatricians, Dr David Jones and Dr Ken Smith. The rest is well known thanks to the paper written by Smith & Jones which became a seminal moment in society’s understanding of fetal alcohol, launching a robust level of research and public interest around the world.

Understanding Fetal Alcohol Spectrum Disorder coverThere is still a compelling need for child protection and welfare services to recognise the burden and impact of FASD on the services they provide. Recognition can aide the prevention of this disability, when allied health personnel become champions of change by imparting the ‘no safe level of alcohol consumption in pregnancy’. When responding to this ‘compelling need’, it is imperative that we consider our current principles surrounding a child’s security and overall development. In intervening for cases of health-related or educational neglect, it is also important to consider the neurodevelopmental factors associated with FASD. As stated in the opening paragraph, the eight children taken to the Washington clinic in the early 70’s were initially labelled with a ‘failure to thrive’; neglect and FASD can be finely intertwined, and require astute skills for Social Work personnel to differentiate.

Perhaps intervention by social workers is required when the caregiver cannot control/manage the behaviour of the young person in their care. FASD has long been seen as a significant concern in the area of a child’s development; problems identified in these children include immaturity leading to behavioural, social and academic challenges when set against the normal developmental milestones of developmental expectations. Poor self-regulation and sensory integration is equally well acknowledged within this cohort of children and such developmental deviation and subtle abnormality can have a significant impact on how the child manages the day to day expectations within a regulated society. Sadly, these children commonly present in child welfare intake systems, but their neurodevelopmental/neurocognitive disability is rarely seen and acted upon. Both neglect and behavioural problems are usually among the two highest categories of concern referred to state systems of child welfare and protection, and it’s within these two categories that FASD is most common.

It is also important to acknowledge the cumulative effect of yearly estimates of FASD births and how this impacts on child welfare services. In the UK, the yearly estimates of FASD births is set at 7,000. As child welfare services are delivered for children age 0-18, the cumulative number of births would be 126,000 across this age span of childcare provision. With a large body of evidence pointing to 50-60% of children born with an FASD condition entering the child welfare services, there can be no argument that FASD is having a disastrous but largely unseen impact on the service. Equally, what research has repeatedly shown and demonstrated is that the prevalence rates of FASDs lands on both our fostering and adoption communities. This in turn will lead to a fiscal burden carried by the child care providers of such services, demonstrated again in a large body of research findings.

Professional acceptance of FASDs’ neurodevelopmental and neurobehavioral presentation is vital to providing the support needed to these children and caregivers. The range of psychosocial interventions that have a proven success rate with these children are required to be common place in social work education modules of child & family teachings. Equally, these skills need to be honed in competency based education provided by employer organisations as part of service development goals.

How can we improve the trajectory and prospects of children suffering prenatal alcohol exposure?

  • National policy advisors need to implement FASD as a recognised disability within disability legalization and policy developments.
  • Currently available early intervention specialist services need to have the skills and training to Identify, Screen & Refer children for clinical assessment
  • Improve the service accessibility of individuals and their caregivers in accessing state services of supports.
  • FASD competency education should become mandatory in state services of professional development protocols.
  • Link current state education strategies on alcohol harm should be altered to firmly include the prevention and understanding of FASD within society.
  • The Social Work profession needs to reclaim, and become a stronger advocate for, the psychosocial needs of both the individuals and caregivers of those living with this disability.

There is a pressing need for this unseen disability to be recognized and acted upon in all aspects of child welfare interventions. Failure to do so is casting these children into a range of secondary disabilities, where they struggle in life with homelessness, mental illness, addiction and clashes with the criminal justice systems.  How can this be achieved?

In order for social work professionals to become stronger advocates, they need to be supported in their skill development on a number of levels.

  • The disability of FASD needs to be fully taught within social work undergraduate education by the university bodies responsible for developing future social workers.
  • All child welfare and child protection service providers who are responsible for professional development of their workforces to commission professional FASD education modules from providers qualified to deliver such education
  • Equally for Social Work to function effectively in responding to FASD, they need FASD as a health disorder to be understood by allied health professionals, policy makers and the public in general.

You can find out more about Liam’s book Understanding Fetal Alcohol Spectrum Disorder: A Guide to FASD for Parents, Carers and Professionals, read reviews and order your copy here.

Independent Mental Health Advocacy: A glass half full?

Independent Mental Health Advocacy is all about giving a voice to those whose rights have been compromised. Hot on the heels on the release of their new book Independent Mental Health Advocacy – The Right to be Heard, co-authors Karen Newbigging, June Sadd, and Karen Machin explain the role that IMHAs play within mental health services, and the principles and practice of the role.


The Mental Health Act allows for people to be detained in hospital and, in specific circumstances, treated against their will. Changes made in 2007 extended these powers into the community with Community Treatment Orders, with the safeguard of a new statutory role of Independent Mental Health Advocacy (IMHA).

In researching IMHA across England, we heard about its value and how it had helped people get off a section quicker, or negotiate a change in medication or leave.  For some people, it enabled them to feel valued and built their self-confidence so that they could advocate for themselves. For a small number of people, however, it seemed like IMHA services were maintaining the status quo, giving the appearance of protecting individuals’ rights without really changing their situation.

As a team, and perhaps particularly because some of us have experience of being sectioned, we were troubled by this finding.  How could an apparently progressive step for human rights be misused or misinterpreted in this way? This led us to reflect on the grassroots nature of advocacy and how its introduction as a statutory duty could have fundamentally, but not necessarily, altered its nature.

Advocacy has a long and honourable tradition in mental health, where the experience of being detained is profoundly disempowering. Limited choices or inadequate support and treatment from mental health services have raised questions about upholding people’s rights and the availability and quality of care.  Incidents that have involved people at specific risk of discrimination have brought this into sharp focus, including the higher rates of detention of African and African-Caribbean people under the Mental Health Act, the poor treatment of people with learning disabilities and, in extreme circumstances, deaths of detained patients following restraint.

The purpose of IMHAs is to provide a safeguard for people detained under the Mental Health Act and to enable individuals to have a greater say in decisions about their care and treatment.  In this book, we explore this type of advocacy drawing on available research, including our own. We take a critical look at IMHA services, considering their foundational roots and the factors that shape how these are provided and that will have a direct bearing on their impact.

The development of IMHA services has to be understood and evaluated in context and the first part of the book is devoted to this. We start by exploring the disputed terrain of mental health and different perspectives on what this means, the origins of advocacy in the survivor movement and the emergence of IMHA services, borne out of the lengthy and contested process of the reform of the1983 Mental Health Act.

Our individual values, experiences and reading of the research on experiences of compulsion raised questions for us about the fundamental purpose of mental health legislation and its value, pointing to much-needed reform.  Although this research reinforces IMHA as an essential safeguard for protecting rights, the interpretation of the legal framework often privileges negative rights (such as refusing treatment), thus overshadowing more substantive rights (the rights to health and civil and social participation). The second part of the book keeps the latter focus in mind, as we discuss how IMHA services should be commissioned and provided, and the skills that IMHAs need to enable an individual to self-advocate, and mental health services to listen.

Access to IMHA services is still problematic and people who might need this form of advocacy the most are often the least likely to have access. We consider how well IMHA services are being commissioned and provided so that they are available and suitable for everyone, such that they take account of prior experiences of discrimination and how these can be reproduced through the mental health system, reinforced by legislation and in advocacy provision.

The relationship between advocates and mental health professionals should be unsettling and can be fraught for various reasons, including a lack of appreciation of the advocacy role and a professional assumption that they are best placed to be the person’s advocate.  Nonetheless, this can also work well, and we identify a framework for understanding such tensions and possibilities for constructive working relations.

It for these reasons that we conclude by looking at the future of advocacy, as a glass half-full/half-empty scenario. This deliberately evokes the paradox described by Peter Campbell (2009:51) that although the right to advocacy is ‘partly recognized, service user influence over its provision is diminishing’. Readers will decide for themselves whether this is a glass half full or half empty!

We have found that the process of coming together and co-writing this book has been a really rich one. We brought different perspectives and experiences to the task and hope that this has resulted in a penetrating analysis of IMHA that both highlight the complexities and suggest some ways in which these can be thought about and addressed. We hope that our book will contribute to shaping future development so that, ultimately, people detained under the Mental Health Act really do have a say, and that their rights, beyond the narrow confines of the Act, are promoted.

Karen Newbigging is a Senior Lecturer at the Health Services Management Centre, University of Birmingham and is active in advocacy research and development. June Sadd, an independent survivor consultant, educator and researcher, draws on her personal experience of the psychiatric system in her work. Karen Machin works freelance in mental health from a perspective of lived experience. Learn more about Independent Mental Health Advocacy – The Right to Be Heard.