A child is a parent’s whole world. Every parent looks forward to the day that their little one is born and they can meet them face to face. Parents all have dreams for their child. They imagine their first step, first word, graduation, a job, marriage and everything else in between that their child may do.
No parent is ever prepared to hear the words that something is developmentally wrong with their child, or that their child is not physically well. It is the biggest blow, and one that makes a parent feel angry, scared and helpless. Some blame themselves. Some blame others. All need to take time to come to terms with the fact that they will always love their child no matter what, these are the cards they all have been dealt, and find a way to help their child live the best possible life they can.
Any kind of diagnosis is scary, and Rhett Syndrome is one of those syndromes. As soon as a parent hears it is considered to be on the autism spectrum, they will usually freak out. Autism is receiving much attention. The information out there for families is great to help support their child, and parents are seeing that it is not the end of the world. People with autism have so much to offer as does everyone else.
Rhett Syndrome being mistaken for autism is quite a common thing. They share a lot of the same markers in terms of diagnosing criteria so sometimes people think they are the same syndrome or condition. This is not the case though. So what exactly are the signs of Rhett Syndrome and why it is often mistaken for autism if it is not autism? Here are 15 of those signs:
15 Onset Between 1 To 3 Years Old
One area where autism and Rett syndrome are quite similar are in the early onset of both syndromes-between the ages of 1 to 3. Children with autism usually appear to lose skills around the eighteen month mark to two years of age. Similar to autism, kids with Rett Syndrome are in the same boat. Though the loss of skills sometimes starts occurring as early as six months old or as late as three years old, they often share the same loss of basic skills between the ages of 1-3 years old. It is progressive; however, with Rett Syndrome as the skills just seem to continue to regress further unless therapy is introduced early. With autism too, kids need therapy pretty much from the get go to get the skills back that they lost and not regress further.
14 Language Regression
One of the scariest milestones that parents have to witness is when their child loses the little language they have gained up to that point in their young life, or worse in some ways, not even gain any language. In some cases, the child never had language to begin with in the case of Rett Syndrome and even with autism. However, with autism kids can develop language more easily than with Rett Syndrome. Those with Rett Syndrome hardly ever acquire any language in their life. It is very challenging for parents and their children of course. Alternate ways to communicate have to be learned by all. This does not mean that things will always be tough. As parents and their children with Rett Syndrome adjust to different ways of communicating, this part of life can become easier.
13 Regression Of Play Skills
Again, there are similarities between kids who have autism and kids who have Rett Syndrome when it comes to loss of play skills. Children who develop Rett Syndrome and autism both tend to start losing skills between the ages of eighteen months and three years old. Sometimes those skills start to gradually disappear. Other times it is more abrupt. Regardless, it is scary for a parent to witness, especially before they know what is wrong with their child. Now with Rett Syndrome, the gene that causes it to develop has been identified so doctors can test for it and let parents know what parents need to prepare for. For autism, there are so many genetic and possibly environmental factors that can trigger autism, that parents do not what is happening at first. That is the main difference that with autism, parents find out much later what is happening.
12 Boys Can Have Rett’s Too
Another factor that causes people to think Rett Syndrome and autism are the same thing, are that boys and girls are both equally susceptible to developing both disorders. Interestingly, however, Rett Syndrome is more common in females and autism is more common in males. When the syndrome manifests in boys and girls it does so very differently. For example, Rett Syndrome in girls is quite a severe diagnosis. Girls gradually lose skills like speech, have a moderate to a severe intellectual disability, and in most cases lose the ability to walk as they get older. Lifespan is unfortunately shorter than for most children too. For boys who develop Rett Syndrome, the above symptoms are that much more severe on all fronts. For autism, it is more common in boys and often more severe than in girls, but this varies. It is not called a spectrum for nothing.
11 Genetics Factor In
Both are genetic disorders with particular genes that set the body up for developing both syndromes. Also, Rett Syndrome shares so many similar markers and red flags that can alert doctors and other professionals about loss of play skills, speech delay or loss, mobility or balance and intellectual delays. People will often mistakenly think they are one and the same thing. What also makes things confusing for many individuals is that Rett Syndrome is often placed on the autism spectrum for categorization due to the similarities listed above by said doctors. Since it is very akin to autism in many ways, people assume it is autism when it is sometimes not the case, or that autism is Rett’s which is also not the case. In both cases families need their children to have early intervention with various therapies to get the best possible results.
10 Mixture Of Therapies Can Help
Speaking of therapies and medical interventions that can help with autism and Rett Syndrome, there are many that can help lessen symptoms, such as occupational therapy, physiotherapy which can help with mobility and coordination/balance issues. Speech therapy can help with receptive and expressive language, (understanding what is being said and being able to speak if capable), and in both cases, though especially for Rett Syndrome, medication to handle the seizures that come with the syndrome. In many cases of autism, medication is prescribed as well. Sometimes children with autism develop seizures so they have to take medication for that. Other times, children will be prescribed medication for anxiety or ADHD, which is sometimes present as a co-morbid syndrome. In each of these cases, the medication along with other therapies can help with giving children and their families the best quality of life possible.
9 Family Support Is Everything
Both kids with Rett Syndrome and autism have something else in common, too; they will require some support from family for most if not all of their adult lives. It depends how severely they are affected by the two syndromes, but things like intellectual reasoning, social skills delays or difficulty interrupting social cues due to cognitive delays, plus for most with Rett’s Syndrome, physical support and help due to gradual loss of mobility. Some individuals with autism experience huge physical issues too, but it is usually those individuals who also have a debilitating physical condition associated with their autism which causes seizures etc. However, in the end both syndromes cause delays that are significant and that will require a family member or close friend who will be there to help with care.
8 Prone To Seizures
As previously mentioned, both syndromes cause children and adults with these conditions to be prone to having seizures. It is pretty much a sure thing with Rett Syndrome and medication is pretty much always needed for health and well-being. For children affected by autism, it is only in certain cases where they experience seizures that medication is even necessary. Sometimes other medications are described for other co-morbid conditions that often come with autism, like Anxiety, ADHD, OCD or others. For Rett Syndrome there is no medication that can stop the seizures, but doctors can help find a dose that will control them as best as possible. Often by the time a child with Rett’s reaches adulthood, the seizures usually stop. There are other issues to contend with then.
7 Difficulty With Emotions
Children with Rett’s Syndrome and autism also have difficulty with their emotions, that is, with self-regulating when they are frustrated which leads to many temper tantrums, meltdowns which are even scarier for parents and the children themselves, as well as with understanding what others are saying to them due to receptive and expressive language delays. They also have difficulty interpreting various unspoken social rules that the rest of us in the world take for granted. The challenges are similar in handling complex emotions too due to the way their brain is wired. Social Skills groups can prove to be very useful for both types of children, and parents rehearsing social rules with them and explaining step by step what is happening, can work wonders. The most important thing, however, is that parents of both children show compassion and patience remembering that their children are doing their best.
6 Timeline Of Disorders
Similarly to autism, those with Rett’s syndrome tend to develop the symptoms in a different way. Some children experience regression almost immediately, whereas for others it tends to happen at or shortly before three years old. There are also children with both syndromes who really regress intellectually and physically quite quickly, and others who take a slower path in their regression. Both instances are heartbreaking for parents, but it is not all beyond their control to help. If parents do get in with interventions, they can help slow some of the regression and help their child grow to the best of the child’s ability. With time and patience, things will improve to the best they can in both cases. Parents need to be realistic however, and take things one day at a time.
5 It’s Part Of The Autism Spectrum
Both Rett’s Syndrome and autism are considered to be on the autism spectrum, due to sharing a lot of the same red flags such as developmental delays between eighteen months and three years old, sudden onset of regression out of nowhere, and the genetic component of both disorders. The genetic component of Rett’s syndrome is a mutation of the X chromosome and for autism it is a little more complicated. The genes that apparently trigger autism are still being investigated and studied in depth. All experts know for sure, is that it is not just one gene that causes autism, so the process of how autism comes about is full of controversy and unanswered questions. The categorization has also caused a lot of confusion as people think that due to Rett’s being on the autism spectrum it is actually autism. That is not the case though.
4 Both Are Neuro Developmental Disorders
Again both Rett’s and autism are disorders that affect the child’s neurology and the development of their body. This means that missing milestones is a regular occurrence for autism and Rett’s Syndrome, as well as catching up with some of the developmental milestones like walking, talking, intellectual ability at a later age. And in some cases not at all unfortunately. It is important that parents do not give up though, and work to help their children where they are at. It’s important to get a good medical and therapy team to help their child and to train the family to do all they can to encourage their child to grow to the best of their ability. Parents need to make sure they have accurate medical and therapeutic support so that their child can improve to the best of their ability.
3 Same Therapies Used For Rett’s And Autism
Speech therapy, Occupational Therapy, Physiotherapy, Art and Music Therapy, and Social Skills Groups are great therapies that work best to help maximize the child’s learning, growth and happiness to get to the best place in their development as is possible. All of these therapies work with children who have Rett’s or autism. Of course, depending on the level of functioning of the child, one may be recommended more than another and/or for a longer duration. Sometimes one is done less due to the child’s strength in that area. However, all of these therapies are used pretty much throughout the child’s life to help them grow in all areas of functioning. It’s fine if parents want to concentrate on one area more than others if they feel the child’s needs require more attention. They can discuss any concerns or issues with their child’s medical team.
2 Similar To A Disintegrative Disorder
Both Rett’s and autism share a lot of the same characteristics of “Childhood Disintegrative Disorder.” This is also considered to be on the autism spectrum due to the onset of regression of skills in the same time frame as the other two syndromes. Eye contact, being prone to seizures and losing milestones that were previously attained like pointing, talking, and/or walking if they were walking, makes people immediately think of autism as the possible label for what the child has. However, as with Rett’s Syndrome, there are so many similarities between the three that they get lumped together on the same spectrum. In the end it does not matter, as long as the children are getting the help and support they need. Parents know that a name for a syndrome in the end is really to help the medical community help their child as best possible.
1 Answers Coming With More Research
Even though Rett’s is easily identifiable genetically and experts can help parents help their children that much more quickly, there is still much research that needs to be done for Rett’s Syndrome. Children do not live long into adulthood with this disorder, and the nature of the syndrome and how it affects eventually being able to walk unassisted as well as the seizures make it a very difficult life for children affected by it and their families. For autism, there is similar stress for the neuro developmental issues as well as if seizures are present. Though there are interesting findings coming out about autism’s origins, the fact of what causes it to be triggered is still a mystery and one that many are investigating. If autism is detected early enough as is Rett’s, parents can have an idea how best to help support their child and help them thrive.
Sources: Epilepsy Org, Mayo Clinic, Autism.com