Parenting with A Disability – Good Support Makes All the Difference
Jennifer Dawson
There are over 4 million U.S. parents with disabilities with children under the age of 18. Nonetheless, many adults who live with a disability may not feel confident in becoming a parent themselves. However, surrounding yourself with a strong, solid support system will make the transition to parenthood easier, and it will also be a major asset throughout pregnancy. Here's what you need to know about the value of a strong support network if you're expecting.
Becoming a parent is often regarded to be a stressful event—in fact, 40% of women feel overwhelmed, anxious and depressed in the weeks following the baby's arrival, according to one survey by Orlando Health. However, becoming a parent can be especially stressful when it comes to managing your own disability and needs at the same time.
Having a strong and well-anchored support system to lean on when times get tough (as well as on a regular basis) is a fundamental must-have when it comes to your mental health and facing the daily stresses that comes with parenthood. As a matter of fact, studies show that having a network of social support has numerous benefits involved, including promoting good mental health and improving the ability to cope with stressful situations.
Finding support online
Many prospective parents with a disability find support in the numerous online resources on both pregnancy and parenting, which can help in preparation for the baby's arrival. When it comes to helpful resources, the Disabled Parenting Project is one example which gives parents (as well as parents to be) with disabilities access to a wide variety of information such as research, as well as an online community that contains advice, conversation and more.
However, becoming informed on basic yet important aspects of pregnancy that may require special attention is beneficial as well—such as understanding what you can and cannot eat while pregnant. Learning about this in advance will allow you to make certain changes as soon as possible, such as limiting your coffee intake and cutting dangerous foods out of your diet altogether.
Surrounding yourself with a variety of people
It's important to take into account that a support system often includes many different people. In addition to your partner, family and friends will likely play a major role in navigating pregnancy and parenthood.
Leaning on them for advice, emotional support, comfort and help in times of need will surely make a world of difference in making the transition to parenthood easier and can be achieved via regular contact (phone calls, visits, outings, etc.). However, there are also other forms of social groups that are worth looking into, such as a local religious community, a social group for parents (such as a mommy and me group) or even an organized support group for those with disabilities, which is particularly useful when it comes to increasing your chances of finding those who may be experiencing the same challenges as you.
In addition to getting help from your partner, family and close friends when it comes to babysitting or helping out with chores around the house, having additional forms of help may be something to consider as well after the baby arrives. This will become a great help in ensuring that both your needs and the baby's are met on a daily basis, whether it be temporary or long term. Depending on your situation, specialized personal care assistance, daycare or even a live-in nanny could become an asset in making the successful transition to parenthood with a disability.
Becoming a parent is an exciting life event for anyone, but those who may experience a disability may face additional challenges that require special attention when it comes to making a smooth transition into parenthood. With the support of family and friends, as well as that of additional resources, you'll be able to make the transition to parenthood much smoother.
Disabilities/Special Needs Organizations
Series: Related Organizations Lists
Includes organizations that provide information about services for children and parents with special needs in your area. If you are aware of any others, please contact Child Welfare Information Gateway at OrganizationUpdates@childwelfare.gov. Inclusion on this list is for information purposes and does not constitute an endorsement by Child Welfare Information Gateway or the Children's Bureau.
Administration on Intellectual and Developmental Disabilities
1825 K St NW Suite 1200 National Autism Resource & Information Center
The major goal of the Developmental Disabilities Programs of the ADD is to partner with State governments, local communities, and the private sector to ensure that individuals with developmental disabilities and their families participate in the design of -- and have access to -- culturally competent services, support, and other assistance and opportunities that promote independence, productivity, and inclusion in the community. The programs address all facets of the life cycle: diagnosis, early intervention, therapy, education, training, employment, and community living and leisure activities.
The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.
A nonprofit dedicated to enhancing the lives of parents living with learning difficulties and their families. It brings together researchers, practitioners, and self-advocates to build the capacity of communities and families to support and improve outcomes for parents with intellectual disabilities. The association’s work mainly centers around education, advocacy at the local and national level, direct support for parents and professionals, and resource sharing.
Association of Administrators of the Interstate Compact on Adoption and Medical Assistance (AAICAMA)
727 15th St NW Suite 1200 Washington, District of Columbia 20005
The Association of Administrators of the Interstate Compact on Adoption and Medical Assistance facilitates the administration of the ICAMA. The Compact is the legal mechanism by which member States regulate and coordinate the interstate delivery of services to children with special needs who are adopted pursuant to adoption assistance agreements. The Association provides technical and legal assistance, education and training, and materials on practice and policy issues.
Association of University Centers on Disabilities
1100 Wayne Avenue Suite 1000 Silver Spring, Maryland 20910
The Association of University Centers on Disabilities (formerly the American Association of University Affiliated Programs for Persons with Developmental Disabilities) promotes and supports the national interdisciplinary network of university centers on disabilities. The network includes University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD), Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs, and Intellectual and Developmental Disability Research Centers (DDRC). Through its members, AUCD serves as a resource for local, State, national, and international agencies, organizations, and policy makers concerned about individuals with developmental and other disabilities and their families.
Center for Advanced Studies in Child Welfare
University of Minnesota School of Social Work
205 Peters Hall, 1404 Gortner Avenue St. Paul, Minnesota 55108
The Center for Advanced Studies in Child Welfare (CASCW) was established with Federal Title IV-E funding and a grant from the Bush Foundation. The goals of the CASCW include preparing graduate students to work in public social services; providing practitioners, policy makers, researchers, and educators with timely information and resources to strengthen the child welfare system's capacity to respond effectively to the families who use its services; and enhancing child welfare training.
Center for Health Care Strategies, Inc.
200 American Metro Boulevard Suite 119 Hamilton, New Jersey 08619
The Center for Health Care Strategies (CHCS) is a health policy resource center dedicated to improving health care quality for low-income children and adults, people with chronic illnesses and disabilities, frail elders, and racially and ethnically diverse populations experiencing disparities in care.
Child Welfare Information Gateway
Children's Bureau/ACYF
330 C Street, S.W Washington, District of Columbia 20201
Child Welfare Information Gateway connects professionals and the general public to information and resources targeted to the safety, permanency, and well-being of children and families. A service of the Children's Bureau, Administration for Children and Families, U.S. Department of Health and Human Services, Child Welfare Information Gateway provides access to programs, research, laws and policies, training resources, statistics, and much more.
Children and Adults with Attention Deficit/Hyperactivity Disorder
Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD) is a national, non-profit, organization providing education, advocacy and support for individuals with ADHD. In addition, CHADD also publishes a variety of printed materials to keep members and professionals current on research advances, medications and treatments affecting individuals with ADHD.
Dove is an organization dedicated to providing services to Deaf, Hard of Hearing, Late-Deafened and Deaf-Blind victims of sexual assault and domestic violence. Dove's purpose is to provide free services and education to Deaf victims, victim service providers and the general public.
Reach a DOVE advocate 24/7 via its 24 Hour Crisis Line (303-831-7874) or email: Hotline@deafdove.org
Families & Communities Rising
800 Eastowne Drive Suite 105 Chapel Hill, North Carolina 27514
Families & Communities Rising, formerly Chapel Hill Training Outreach Project, is a Durham, North Carolina based nonprofit organization with locations in Durham, Orange and Chatham Counties of NC and programs that reach nationwide. FCR is a national provider of training and technical assistance services, audiovisual and print materials, and offers direct services to children, families and communities.
Family Voices is a national, nonprofit, family-led organization with the mission to support advanced health-care programs for all children and youth, particularly those with special health-care needs. Partnering with family leaders and professionals at the local, State, regional, and national levels since 1992, Family Voices focuses on enhancing health-care programs and policies and ensuring that health-care systems integrate the voices of families.
FASD United, formerly the National Organization on Fetal Alcohol Syndrome, is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and to improving the quality of life for those affected by fetal alcohol syndrome/fetal alcohol effect. FASD United is committed to raising public awareness of fetal alcohol syndrome and to developing and implementing innovative ideas in prevention, intervention, education, and advocacy in communities nationwide. NOFAS also operates a national clearinghouse for regional, State, and local fetal alcohol syndrome organizations.
The Global Hydranencephaly Foundation provides individualized family support and advocacy services to families across the globe who have a member with hydranencephaly.
Hands & Voices is a nationwide organization dedicated to supporting families and their children who are deaf or hard of hearing, as well as the professionals who serve them.
The purpose of the Little People of America Adoption Committee (LPA) is to find a loving home for every dwarf child. The role of LPA is to act as a link between prospective parents and adoption agencies that represent dwarf children. LPA is not an adoption agency, but a referral source only. By outreaching to adoption agencies, doctors, hospitals, geneticists, and others, LPA is are able to locate available dwarf children for adoption and prospective parents who are interested in adopting them.
National Center on Secondary Education and Transition
150 Pillsbury Drive SE 6 Pattee Hall
Institute on Community Integration/University of Minnesota
The National Center on Secondary Education and Transition (NCSET) coordinates national resources, offers technical assistance, and disseminates information related to secondary education and transition for youth with disabilities in order to create opportunities for youth to achieve successful futures.
National Council on Disability
1331 F Street, NW Suite 850 Washington, District of Columbia 20004
The National Council on Disability (NCD) is an independent Federal agency making recommendations to the President and Congress to enhance the quality of life for all Americans with disabilities and their families. NCD works to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and to empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.
PACER Center, Inc. provides information, training, and assistance to parents of children and young adults with all disabilities; physical, learning, cognitive, emotional, and health. Its mission is to improve and expand opportunities that enhance the quality of life for children and youth with disabilities and their families.
Parent to Parent supports a national network of programs to ensure access to quality emotional support for families of individuals with disabilities and/or special health care needs.
Partnership for People with Disabilities
700 East Franklin Street, 1st Floor Box 843020 Suite 140 Richmond, Virginia 23219
The Partnership for People with Disabilities, formerly known as the Virginia Institute for Developmental Disabilities (VIDD), is recognized by the Federal Administration on Intellectual and Developmental Disabilities (AIDD) as a university center for excellence in developmental disabilities. The Partnership currently operates more than 20 Federal and State programs, supporting individuals with disabilities and their families.
SAMHSA Fetal Alcohol Spectrum Disorders Center for Excellence
The mission of the Fetal Alcohol Spectrum Disorders (FASD) Center for Excellence is to facilitate the development and improvement of FASD prevention, treatment, and care systems in the United States by providing national leadership and facilitating collaboration in the field.
The FASD Center is a Federal initiative of the Substance Abuse and Mental Health Services Administration (SAMHSA), U. S. Department of Health and Human Services (HHS).
Social Security Administration
2100 M Street NW Washington, District of Columbia 20037
The Supplemental Security Income (SSI) program provides monthly payments to adults and children with a disability or blindness and who have income and resources below specified amounts.
nadid: 30242
The Arc
1825 K Street NW Suite 1200 Washington, District of Columbia 20006
The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
To locate an Arc chapter in or near your community, please see
The National Center for Disability and Pregnancy Research conducts multidisciplinary research, training, and education on reproduction, pregnancy, and disability, including reproductive health, sex education, prenatal health, childbirth, and more.
The mission of the National Down Syndrome Adoption Network is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.
nadid: 30325
The National Research Center for Parents With Disabilities
415 South Street, MS 035 Brandeis University Waltham, Massachusetts 02453
The National Research Center for Parents With Disabilities conducts research and provides training and technical assistance to improve the lives of parents with disabilities and their families.
The Special Interest Research Group on Parents and Parenting With Intellectual Disabilities
The Special Interest Research Group on Parents and Parenting With Intellectual Disabilities (SIRG/PID) is the first and only world-wide group dedicated to the scientific study of intellectual disability. SIRG/PID is a scientific and interdisciplinary nongovernmental organization that promotes worldwide research and exchange of information on intellectual disabilities.
nadid: 30708
Through the Looking Glass
3075 Adeline St. Suite 120 Berkeley, California 94703
Through the Looking Glass (TLG) is a nationally recognized center that offers research, training, and services for families in which a child, parent or grandparent has a disability or medical issue. TLG is funded in part by the National Institute on Disability and Rehabilation Research (NIDRR), U.S. Department of Education. TLG was awarded a grant by the NIDRR to continue its work through the National Center for Parents With Disabilities and Their Families. The National Center continues TLG's overall mission of empowering parents and potential parents with disabilities by disseminating disability-appropriate information regarding parenting to parents, disability advocates, and legal, medical, intervention and social services providers.
I was raised in a home that cared for foster children and my grandparents were also foster parents as well. So when we heard that we were not going to be able to have our own children, I did what my family does. I became a foster parent. Those kids grew and became parents and have had their share of challenging moments.
I’ll admit, there have been times when I haven’t known what to say to people who are stuggling. Especially if I haven’t been in their shoes. To help you know what to say to a Christian special needs parent who is struggling in life and in their faith, here are four things to not say, and what you could say and do to truly encourage them:
God will not give you more than you can handle.
If someone says this phrase to you, it makes you feel guilty, like you should be able to handle all the challenges life throws your way on your own. I promise you, life can be challenging and your circumstances more than you can handle on your own, which is exactly when you find yourself on your knees, begging God to help you. It is God who gives you strength in those moments. This commonly heard phrase is a misquote from 1 Corinthians 10:13 which states “God will not let you be tempted beyond what you can bear.” Meaning, we will face many temptations in our lives, but with self-control, we can always say no. It doesn’t mean life will be easy and we won’t experience hard circumstances in our lives. So many Bible heroes faced more than they could bear and turned to God for strength. They definitely experienced more than they could handle, and so will we on earth.
What to say instead: “I know life is challenging right now, how can I be praying for your family?” Listen intently to their answer. Bonus points for praying with them right then and there, or follow up a few days later with a card, phone call, email or text letting them know you’ve been praying for them. It would mean the world to them, I promise.
God gives special children to special parents.
I dislike this phrase for three reasons. First of all, we as parents of children with special needs don’t like hearing that phrase, because we’re just being parents, doing what must be done to care for the children we have been given and love with all our hearts. Any parent who loves their children and has the resources to do so, would do the exact same. Secondly, the phrase sounds like we are like Job, God found us with some kind of super-spiritual faith and decided to test us/bless us with the challenges of parenting children of special needs to see how we’d do. God longs to bless us, not bestow challenges upon us. Thirdly, the astoundingly high number of special needs children in the foster care system and in orphanages around the world show that sadly, children with special needs are given to parents who cannot step up to the job. Nope, special needs parents aren’t special, they are just parents doing their best for their child(ren).
What to say instead: “You’re a great mom/dad!” or “You’re doing a great job!”
I could never do what you’re doing.
Although this statement may be said in admiration for a person’s strength and perseverance, hearing this statement (no matter what the life situation is) is just not encouraging. It makes you feel like something is wrong with you or your life. Yes, it is true that we special needs parents have a lot of burdens to bear and we could use some encouragement and support in carrying the load, but you could do the same as us if you had to. After all, we “can do ALL things through Him who gives us strength.” (Philippians 4:13, emphasis mine). I think that if your own child had special needs, you would be doing exactly what we special needs parents are doing, loving and supporting your child in every way you knew how.
What to say instead: “What can I do to help?” Or, pick something to do to help. Ask if you can bring over dinner one night and find out about dietary needs and restrictions. Offer to baby-sit one night so the parents can go on a much-needed break or date night. Invite the family to hang out sometime to get to know them better.
Have you tried [insert supplement, diet, therapy, product, etc]?
Although well-meaning and trying to be helpful, offering an expensive therapy or diet or product is not helpful when advice is not asked for. It also makes us feel like our children need to be fixed, and the next thing we try could be the “silver bullet” that will “cure” or “heal” our child, rather than our children being loved and accepted for who they are.
Chances are, we’ve already done a ridiculous amount of research ourselves. We’re already doing a lot and paying a lot of money to help our child. Being offered yet another thing to try makes us feel like we’re not doing enough to help our child and if we just try this one more thing, it will work wonders for our child too.
And if it’s a question coming from someone trying to sell something within their direct sales company, that can come across as selfish and salesy, rather than helpful and supportive. (Note, I’m not against direct sales, I actually love and buy from several direct sales companies, but I’m sure you know what I mean, feeling like you are being sold to rather than supported).
What to say instead: “How are you doing?” or “How are things going with [child’s name]?” Then listen to the answer. See what their needs are. If they admit they need help or don’t know what to do, then you can suggest whatever you have in mind to suggest, as they are asking for your advice. But if things are good or they don’t ask for your advice or opinion, then don’t share it. Either way, just be supportive. Be a friend. Let them know that you’re on their side and you love them and their child just as they are.
What it comes down to is we want to be reminded of the love and the promises of God by our fellow believers. We don’t want to be treated as special, or ignored because people don’t know how to help us or what to say to us. We want to be treated as fellow members of the body of Christ who need a little love and encouragement. And we want our children to be loved and accepted just as they are.
In 1997 Montessori and open ended play and art were not that popular. Mostly because they were new to the majority of adults in America and so they seemed complicated. However, anyone providing care for my children knew:
1. Control the options and site only offer safe options that you want them to choose from and a safe site to play and create from
2. Let them choose from the options that you offered or as they mature, make a plan together and they will learn how to negotiate, problem solve and how to adapt in using just what is available.
3, Follow their interest- give them room to grow and create their own identity. Follow thier interest to learn what they can focus on and enjoy. Build from that information as you create Hopeful Art trays or invitations to play for the future.
4. Let them choose when to finish and clean up.
Now that my kids and students are grown, I see the weaknesses in how I handled things. Respecting others, waiting for others, sharing with other, submitting to authority and warnings was never taught.
What I should have done, was to also offer other types of play and art with clear goals of learning something new or playing according to certain rules of conduct. That way they develop social skills and empathy required in society. They learn to bend and compromise for the best possible outcome.
Through several styles of play and creating, a better balance of social interaction is developed. The skills of adapting to the situation will become a framework for their work from as an adult.
So is the path of least resistance the most effective for cultivating high self-esteem? If a parent caters to the child’s every whim and corrects them only sparingly, perhaps kids will develop otherworldly levels of confidence? Unfortunately not.
Permissive Parenting – Why Indulgent Parenting Is Bad For Your Child
Permissive parenting, also known as the indulgent parenting style, is a parenting style characterized by high responsiveness and low demandingness. Permissive-indulgent parents are very responsive to their child’s emotional needs. But they don’t set limits or are very inconsistent in enforcing boundaries.
Permissive Parenting Examples
Here are the characteristics and examples of permissive parenting style.
Responsive Permissive parents are responsive to their children’s needs.
Indulgent parenting Permissive indulgent parents rarely say no to their children’s demands. They may also use toys or food as bribe to get their children to behave.
Lenient parents Permissive parents are lenient and overly lax. They dislike control and authority over their children. They do not monitor or guide their children’s behavior. They have very few rules and standards of behavior. When there are rules, they are not consistently enforced.
Treat their kids more like peers or friends than children Permissive parents want their children to see them as friends rather than authority figures.
Children’s freedom over responsibility Permissive parents place very little responsibility, such as chores or homework, on their children.
Let children make major decisions generally reserved for adult guardians without guidance.
Permissive parents generally do not monitor or regulate their children. As a result, studies have found that children of permissive parents tend to struggle with self-control, which leads to a variety of bad outcomes.
Here are some of the negative effects of permissive parenting.
Worse academic performance Lax parents do not monitor their children’s studying habits. So their children have less self-discipline. Permissive parents also do not demand their children to perform or set a goal for their children to strive for. Studies show that children of permissive parents tend to have lower academic achievement.
More impulsive and aggressive Permissive parents do not control or regulate their children’s behavior. So their children are less aware of the limits of acceptable behavior. They also exhibit worse impulse control and have more behavioral problems. When facing stressful situations, they are more likely to resort to using aggression.
More prone to delinquency, substance abuse and alcohol abuse Studies have found that children of permissive parents are more likely to be associated with crimes, substance abuse and alcohol-related issues because they have worse impulse control.
Less able to self-regulate Emotional regulation is not something we are born with. It is a learned skill. Because children of permissive parents are left to regulate their own activities, behavior and emotions at a young age, they tend to have more difficulties self-regulating.
Worse social skills Studies have found that children raised by permissive disengaged parents tend to have less empathy leading to worse social skills. They generally display more anti-social behavior.
More likely to be overweight Permissive parents do not regulate their children’s eating. These children are twice as likely to be overweight compared to children raised by authoritative parents.
Are You A Permissive Parent?
If you fit some of the descriptions in the Permissive Parenting Examples above, you may be a permissive parent.
Or you may not.
The devil is in the details.
On the surface, the authoritative style and permissive style have a similar approach in raising children.
They are both warm and responsive, and they give children lots of freedom and autonomy.
Therefore, authoritative parents are often accused of being permissive by authoritarian parents.
Even though the two parenting styles share some similarities, there are subtle differences between them.
Permissive ParentingAuthoritative Parenting
Always say yes to their children’s demandsSay yes to their children’s demands when they are reasonableDislike control over their children. They do not monitor or guide their children’s behavior.Dislike control over their children, but they monitor and guide their children’s behaviorHave very few rules and standards of behavior. When there are rules, they are not consistently enforced.Have some rules and standards of behavior. They are consistently enforced.Let children make major decisions generally reserved for adult guardians without guidance.Let children participate in making major decisions with guidance.Place very little responsibility on their childrenPlace sensible amount of responsibility on their children
For more help on calming tantrums, check out this step-by-step guide
What To Do If You Are A Permissive Parent
Permissive indulgent parenting can lead to a number of bad outcomes in kids.
Here are some strategies you can use to turn things around.
Announce it Let your kids (and spouse / co-parent) know that you will adopt an authoritative parenting style from now on. Assure them that you will still be warm and responsive to their needs like before, but now there are rules and limits you will enforce.
Involve children in making rules Hold a family meeting to discuss what rules are needed. Ask their opinions and discuss the pros and cons. But you have the final say.
Decide consequences for breaking rules There needs to be clear and reasonable consequences for kids for breaking the rules. Remember to use natural consequence to discipline (not to punish).
Follow through This is the area many permissive parents lapse when they try to dislodge their permissive habits. If you are used to being the “nice” parent, it can be a struggle not only for your kids, but also for you.That is another reason why using natural consequence is so important. You don’t need to to be unkind or be the “bad” guy. You are simply teaching your kids new behavior by letting them experience the natural consequence. The goal is to teach, not to punish.Remember, being consistent is one of the most crucial aspect of authoritative parenting allowing for the best outcomes in your children’s upbringing.
What To Do If Your Spouse / Co-Parent Is Permissive?
Having two authoritative parents is ideal.
However, we can’t always count on changing others.
If your partner is permissive and you’ve tried but didn’t succeed in changing him/her, the best thing to do for your child is to maintain authoritative parenting habits yourself.
Research shows that children turn out better if they have at least one parent using authoritative discipline than if they have none.
The Opposite Of Permissive Parenting
Some parents who fear the outcomes of permissive parenting want to do everything to avoid it.
However, do not overcompensate.
Because permissive parenting is responsive and not demanding, some parents believe that the exact opposite, i.e. not responsive and highly demanding, is good.
It is not.
Because when this happens, you are using an authoritarian parenting style, which can lead to a similar set of bad outcomes in children.
References
College drinking behaviors: Mediational links between parenting styles, impulse control, and alcohol-related outcomes. by Patock-Peckham, Julie A.,Morgan-Lopez, Antonio A.
Parenting Styles As Predictors Of Emotional Regulation Among Adolescents. By Farah Jabeen, M. Anis-ul-Haque, Muhammad Naveed Riaz, 2013
Supporting pregnant autistic people
Published on 06 October 2022
Author: Diane Fox
Diane Fox is an autistic midwife and researcher. She is Vice Chair of the Maternity Autism Research Group (MARG), working together to improve autistic experiences in maternity care. Here Diane outlines some of the difficulties autistic people experience during pregnancy, and how best to support them.
It is important to raise awareness, acceptance and understanding of autistic people in maternity care provision to improve health outcomes and address inequalities. Current research is exploring autistic people’s parenthood and how health professionals can improve provision. Does your maternity provision have an autism policy/guidance or embedded practice? Let’s explore some of the challenges autistic pregnant people can experience, and best practice to provide appropriate support.
According to research by McCrossin (2022) 80% of autistic women are not diagnosed by the time they turn 18 – they may ‘mask’ or hide their needs during childhood and adulthood. As a result, many in pregnancy may not have a diagnosis or support in place, leading to health inequalities that affect physical and psychological wellbeing.
Pregnancy can be a time when autistic people need extra support. Therefore, health professionals should understand the possible issues an autistic person may experience, knowing that each individual has different needs. Best practice is for a comprehensive Personal Care Plan (PCP) to be developed in partnership with the individual.
Challenges autistic people might experience
Sensory differences – sensitivity to sounds, light, taste, touch, personal space and eye contact.
Communication differences – such as a preference for clear, unambiguous language, or broken-down information.
Anxiety – may be very anxious in an unfamiliar environment, or not knowing what to expect over an appointment, pregnancy or parenthood.
If things become overwhelming this may result in a ‘shutdown’ or a ‘meltdown’. This can be very exhausting and lots of time and space will be needed to recover. Some autistic people may cope by not accessing treatment and care, which might be seen as non-compliance and can lead to health inequalities.
Using the SPELL Framework
Structure
Having a predictable routine and environment can help autistic people feel calm, safe and in control with best practice such as having:
a predictable routine and environment
continuity of the same care team throughout
clear guidelines and processes to help manage expectations
opportunities to meet staff and visit the ward prior to labour.
Positivity
Be positive, kind and understanding, without bias or judgement – especially in new and challenging situations – such as labour, and establishing feeding and postnatal routines. Be supportive of the individual’s decisions, and take their lead.
Empathy
Be empathic when communicating, and try to reduce anxiety and distress. Use questions such as ‘What do you need to feel ok?’. Also, be accepting of self-soothing behaviours and be accommodating of the individual’s sensory and communication preferences.
Low arousal
Ensure a low arousal approach to reduce anxiety, for example use low lighting, and reduce sounds, with minimal small talk and interruptions.
Links
Help to create and maintain links to a support network – family, friends and professionals if needed. The individual may need extra support to adjust to parenthood. Ensure clear links and updates are in place with GPs and health visitors prior to discharge from maternity services.
Other factors to consider
Staff should be aware of co-occurring conditions that autistic people may experience, such as:
hypermobility
ehlers danlos syndrome
fibromyalgia
attention deficit hyperactivity disorder ADHD
dyslexia, dyscalculia, dysgraphia, dyspraxia.
The autistic individual may also identify as non-binary or gender-fluid, therefore, staff should be conscious not to make assumptions about someone’s gender.
Current research is exploring psychological and physiological issues that may affect autistic people in and after pregnancy. Some evidence suggests that autistic individuals may have a higher likelihood of experiencing:
health conditions which can affect pregnancy such as heavy menstrual periods and polycystic ovary syndrome (PCOS)
mental health conditions such as post-natal depression or anxiety.
More research is needed in this area, and findings should inform care provision and influence policy implementation to reflect best practice.
In conclusion, it should be noted that pregnant autistic people may have specific or additional medical and care needs, and comprehensive care planning is required. Linking possible care outcomes to care provision is crucial to understanding the extra support autistic people need. Therefore training, co-produced by autistic people, should be done in healthcare settings and in midwifery pre-registration training.
The next step towards best practice would be for the development of national guidelines and local protocols in maternity services, alongside the creation of autism leads in maternity care. This will lead to improved health outcomes for autistic parents or parents to be, and their families.
Being a mother brings with it the most amazing feelings. It has an almost out-of-body feel to it. Thoughts of how this little person could amazingly be yours. A real live little human who is breathing, growing and simply stunning in every way.
Being a mother means you’ve begged time to stand still. You’ve watched the clock seem to fast forward in a way that cannot be controlled. You’ve spent hours breathing in the smells of your babies and hours gazing on their little faces, memorizing their each and every detail. Knowing every freckle, every dimple and even the very length of their long eye lashes that you secretly envy. How could they be so perfect?
I felt all these feels. I owned them. Embraced them. Breathed each and every emotion in. Time argued fiercely with me, time demanded to go on. It demanded to take my newborn into the next stages of life. It demanded they grow faster than I thought possible. It demanded they go from helpless to crawling and from crawling to walking to eventually having their own unique personalities to make decisions for themselves. Time refused to stop.
When I worked and the workday came to an end, I would immediately rush to pick my babies up. Another minute couldn’t pass without seeing them, so I could once again breathe them in and feel their arms tight around my neck.
Then something happened.
Time caught up with me. Time demanded that I know now that all the years as an exhausted and fatigued teenager had been there for a reason. Time now nearly stopped. Time stood still as pain took up a permanent residence in my body. Days turned into weeks, weeks into months and months into years as I struggled to understand what was happening. Why was my focus on my babies being so blurred with pain? Why did I go from begging time to stand still to now begging it to hurry up? Hurry up to get answers. Hurry up to feel better. Just hurry up.
Pain is a tricky thing. It shifts your focus to just getting past that moment. You wait impatiently for it to pass. But while you’re waiting for the endless and chronic pain to pass in what seems like a frozen moment in time, life keeps going for everyone else, including the babies you begged to slow down.
With life suddenly wearing you down with the exhaustion of an endless flu, you find yourself almost wanting your babies to grow up just a little bit more. To not cry so much. To be able to express themselves with words and not just a display of emotions. To be able to soothe themselves just a little bit, since you don’t have much left in you to soothe them. Yet, you do anyway because they want you. So in pain and in exhaustion you give your babies what very little you had left. And what you had wasn’t what a typical parent has left. You were already empty, but you poured the last few drops out for your babies.
How your greatest joy turned into your biggest struggle is something you could have never imagined.
Your thoughts shift to a time when they maybe won’t hang on you quite so much. When they won’t cry so much. You wish they were older, but while you’re thinking that, you wonder what has become of you because you know deep down inside that time already moves way too fast. Way too fast.
Now their childhood is becoming a blur. Memories are mixed with thoughts of pain. Although there may be many wonderful times and good memories ahead, which I’m beyond grateful for, it’s so often tainted with a flu-like feeling.
So with all this being said, I realize there is a great sadness behind these words. There is a bitterness that lingers in the air. Bitter that one of the greatest joys I’ve ever known had been so abruptly altered for me. Bitter that I couldn’t completely enjoy my babies without the heaviness of guilt hanging over my head. Bitter that there are days I need to rest and my babies need to be away from me. Bitter that their mom can’t be just like their friends’ mothers.
Yes, I put on a good show when I have to. I can usually pretend this chronic condition doesn’t exist when it calls for it but not without a cost. Pretending to be normal will almost always result in a need to beg my body to forgive me. But I’ll beg my body to forgive me for the rest of my life if it means making memories with my babies.
However, I can’t help but wonder what life is like as a mother without endless chronic pain and exhaustion. I can’t help but think what life would have been like if this illness just held off until my children were grown. Would I feel less guilty? Or less bitter about missing out on too many moments? Less torn between my body’s demands for rest and the strong motherly instinct to be there with my babies? Or will that feeling, regardless of their age, never go away?
So if you’re a mother with a chronic illness fighting the same guilt I am, please know you’re not alone as I am not alone. When we are feeling heavy with feelings that only a mother with a chronic illness could understand, reach out to others who understand.
In the end, we simply have to remind ourselves that love is what matters. To take the moments we can and soak it up like a dry sponge. Let love fill those gaps of guilt.
Love is, after all, what the heart remembers the most.
